MichaelV's Journey with Prostate Cancer

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  55. 55 Radiation Icon Radiation
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Patient: Prostate Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 14 years ago, Male, Age: 76, Stage IV, Progressing despite hormone therapy: Yes

  1. 1
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Diagnosed

    Oh No

    My "Oh, no not me" came on slowly as I was first told my PSA had risen from 0 to 9+ in a year. Not what I wanted to hear. The next step was to find a urologist and have a biopsy which was not much fun at all. In fact, the deadening stuff, I think it was Novocain did not work all the way and I had 9 "snips" taken I felt the last 5. Not fun again. Then the "wait" and finally I go into the nice office reserved for bad news and hear that I have an aggressive form of prostate cancer. Not fun again! I was told to go home and think about what I wanted to do and talk to my girl friend(did not have one and said I would talk to my hand as that was the nearest thing I had at the time) about my condition. I said, "when my XXX leaves this chair we will have a decision. If you think I'm going home and worry for a few weeks you are very wrong." After going through all the possible things I could do which included nothing, I decided to have my prostate removed ASAP. I had to go and give 4 pints of blood so my own blood could be used during the operation, not a pleasant thought but then there are not many pleasant thoughts when you talk about prostate cancer. I decided not to tell the family as there was no point in worrying them and they would find out just before the surgery. That was a very hard 2 months.

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  2. 2
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Radical perineal prostatectomy

    Procedure or Surgery

    Well, I had to give 3 or 4 pints of my blood to be used during the operation. It took 8 weeks to perform all the blood drawing. As the day of the surgery grew near I had a fear that I developed during my teenage years after I read a book by Albert Camus where he describes a spinal tap that one of the characters in the book had. I became somewhat obsesses with the whole idea. Well, two nights before the operation I had what has turned out to be my last normal good sex night with an old friend. Sort of a favor to an old friend. The night before the operation I took the usual "clean it all out" drinks and went to bed dreading the spinal tap. Check-in at 5:30AM and signed all the forms and headed up to the surgery wing. Got undressed and went into a room with 1/2 doz. what looked cots all draped in white. A young intern came over and asked me how I was and I said, "Somewhat nerves". He laughed and gave me the usual speech about, "There is nothing to worry about". Easy for him to say and again all that was on my mind was the spinal tap. The intern said, "Gonna give you a spinal tap, it is really nothing". I said, "Great, will I be awake?" "Noth'in to worry about” I asked, "Hey, I brought some opera music to sort of calm down all those in the operating theater. Can you make sure they get the CD's before the operation? And one more thing, if you see any of the surgeons having a shaky hand, I can always come back tomorrow." The next thing kind of stunned me, the intern brought up an old chair and said I should swing sideways on the bed and bend forward and put my feet on the chair. I thought they should have some sort of contraption to give a spinal tap not just an old chair to lean on. Well, now we had come to "that moment" I had been dreading; it was "tap time". The intern rubbed my back with some sort of solution and I gritted my teeth and waited for the awful moment of the needle going in. I felt an ever so slight XXX in my back asked if he could get this over with as I have an unnatural fear. His reply, "We're all done". I felt light headed. He ask me to lie down on my side and be sure not to roll over on my back, I wouldn't have done that for anything. Then he said he was going to start a "drip" and I thought I would still be awake when I went into surgery but that was not to be. As I was telling him about the CDs I brought, I was wide awake one moment and gone the next. Never got to see or have a chat with the operating staff. Oh well, so much for all my pre-planned thoughts. I woke up some 6 hours later in my room with lots of tubes and gadgets making noises right next to my bed. I was told I had gone through the operation just fine and the doctor would be in later in the day to tell me a few things. I now had a button that I could push to give me pain medicine when all the drugs from the operation had worn off. Although it was painful, it was not as bad as I thought it would be until I coughed and almost blacked out. No one told me about that aspect of the operation, wow, what a really unpleasant surprise. We, some friends came in to say hello and my daughter showed up and she was all worried that I might die just like her cat did a few days before. Loved hearing that one. In the early evening the doc came in and told me all went well and they didn't see any cancer in the lymph nodes which they had remove along with my prostate. He assured me that the cancer was all contained within the gland. Well, that was really good news which was not quite true as the cancer came back two years later but then I am getting ahead of my story. I watched a little TV and the staff came around every 4 hrs to take my blood pressure and check all the gadgets. Oh, I forgot, the doc told me I had to cough at least once an hour while I was awake, I said to him, "you must be out of your XXX-in mind!". He said it had to be done and I can't even remember the reason. Well, the next day one of the many nurses that were checking on me can in and told me the secret as to how to cough without passing out from the pain. You take one of your many pillows and grab it by both ends and press hard into your gut and then you cough. Worked like a charm. Question, how come the good old doc couldn't give me this info?????? Well, I started reading a Harry Potter book and time went by. At around 4PM I got the hiccups, not the thing to get when you gut has a 8" slit in it. So, I punched the button a few times and it helped with the pain. Well, come six o'clock and the hiccups were still with me so I asked for some relief and this is where the fun started. I had no less than 10 different people come into the room and give me their solution to curing the hiccups and sadly to say, none of them worked but it did help to pass the time. I was given some extra pain pills to take away the hiccups but they had no effect on the convulsing diaphragm. By 9 o'clock I had a new floor nurse and I told her to call the doctor and give me something to stop the hiccups. She argued with me that I should not disturb the doctor at such a later hour, I said, "He'll be happy to hear from me and anyway, that is why they pay him the big bucks, he is always supposed to be on call." Well, we exchanged a few more heated words and she finally caved and went and called the good doctor. The head nurse comes back in after 10 minutes and has a pill for me. I said, "What is this one called?" Her reply, "Thorazine". All I could think of is the movie, One Flew Over the Cuckoo's Nest. Well, after all the fuss, I had to take the pill and the nurse had one of those slim smiles on her face. Now, more people have heard about my hiccups and they are coming from other floors and areas of the hospital with their solutions to my hiccups. It actually was very touching having all those people come and volunteer a solution to my problem. Bottom line, it is moving in on midnight and I still have the hiccups. I hit the "nurse" button and after some go around the head floor nurse is back and tells me flat out it is too late to call the doctor now, I will just have to wait til morning. I said, read my lips, call the XXX doctor, you wouldn't want to go through the night with the hiccups and neither do I. Well, the tone got stronger and finally I just said like a cop on the beat, "Call the XXX doctor, he gets paid for this". About 12:30AM in she comes with now two pills, it's the Thorazine again. I'm XXX, "We already did this stuff and nothing happened". I took the pills and about 20 minutes later I was out cold. When I woke up around 6AM I did not have the hiccups. Now here is the interesting part. I had an Uncle Vic who had held the record for the most days in a row with the hiccups. Back in the 30's Uncle Vic went to Mayo’s and he had several operations and half his stomach was removed because of cancer. After the operation he had the hiccups for some 26 or 28 days, I really can't remember. This is where it even gets more interesting: Uncle Vic spent the last 3 months of his life (he was 86) in a hospital (Michael Reese Chicago) dying from prostate cancer. So I figured that Uncle Vic had come to visit me in the hospital and that was his way of letting me know he was there and looking out for me. So now we are into the third day of my stay in the hospital and I have to get out of bed and walk, walk, walk; they don't care where I walk, just walk. So me and my rolling machines go for a walk every two hours around and around the floor I am on. It appears that I am one of the lucky ones cuz everyone looks much sicker than I. Now I have a really cute nurse who wants to give me one of those standup baths, you know, you stand there naked, with tubes and wires hanging off you and they give you a sponge bath. I had turned her down the day before and now she was back pushing, pushing, pushing for the sponge bath. My last bit of modesty was about to leave my mind forever. So there I am, standing in a bathroom, completely naked with the tubes hanging out while this young girl gives me a sponge bath. Not a pretty sight! Well that is over with and it is time for a blood pressure check and it is the Indian doctor who has not been certified so he is stuck doing blood pressure tests. We have gotten to know each other quite well and have had a few good chats late at night when he comes by to put the "cuffs" on me. We, this time he can't get the cuff to fill up with pressure. He changes the hose and tries again, no luck, we laugh and he says he will be back with a new hose. 10 minutes later he comes back and hooks up everything and the cuff begins to inflate and the hose blows off at one end! We laugh and he says, “I’m going to another wing and borrow their blood pressure cuff. He comes back some 20 minutes later and we get ready to go and nothing happens, no inflation, no noise, and no nothing. This is not a good thing. He tells me some of the "stuff" that goes on in the hospital including some people coming from other wings or floors and "trading" their instruments for ones in another wing, not their own. He now tells me that he going to do the same kind of "permanent borrowing" so we can get my blood pressure reading. He is back in another 20 minutes and has what looks to be a brand new machine and it works like a charm. We have a few more conversations about the medical profession and what he learned in India as opposed to what he needs to know to pass his boards here in the USA. It is now about 4 AM and I going to get some sleep because I’m not “cuffed” anymore. The fourth day I go home in the middle of the afternoon with a catheter stuck in place and a bag hanging off my leg, all set to go dancing! Bye-bye hospital, it has been a slice.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Urinary changes (frequency, urgency)

    Side Effects

    So, for many months after my surgery I kept hearing this phrase: "Well, that just about never happens” and “I don't think I've seen that before" and it was from my urologist!!!!! And this is what happened: When I left the hospital after having my prostate removed with a catheter and a bag I thought, "OK, I can deal with this" WRONG! I got up and out of the house in a few days and wore some bib-overalls to make it easier to deal with the "bag". After about 2 weeks I noticed a great painful sensitivity if the catheter hit or bumped into anything including my bib-overalls. Well, I just tried not to rub against anything. About 3 1/2 weeks after the operation I went to the urologist's office to have the catheter removed. I lied down on the table and he emptied the balloon inside my bladder which keeps the catheter from slipping out. Then he said, "This might feel a tad uncomfortable" and he then pulled out the catheter and I saw stars and had a pain the likes of which I had never experienced. I laid there shaking and nearly passing out. Many minutes later the pain had gone from a 10+ down to a 2-3 and I was able to speak. I said what the XXX happened? He explained that my body had decided to attach itself to the catheter. This was the second time in our relationship that I heard the now familiar quote, "Well, that just about never happens." It took almost a half hour before I could get up and move around and they gave me some pain pills and my friend drove me home. When I finally peed on my own, I discovered the ONLY advantage to have my prostate removed: I could now pee like a teenager! Wow, how much fun it was to pee a 1/2 liter in 8 seconds. I think I could have knocked down a tall building if I stood too close and relieved myself!!! Things went well for about 2 weeks when I started to get small spasms in my groin when I had to pee. I just figured it was the healing process and chose to do nothing about it. Over the next couple of weeks the spasms got worse and worse and I noticed it was taking longer and longer to take a normal pee. Finally, I could hardly pee at all and the spasms had turned into cramps. I call the doctor and he had me come to the office immediately. He said that my urethra was closing up where it had been reattached to my blade. He went in my XXX with an instrument to look around. I said, “Hey, that big thing is not going to fit into my little opening”. He told me he was going to put some Novocain on the tip and it would just be a little uncomfortable. Well, it was way uncomfortable and I held on for dear life. He finally withdrew the large snake and said, “We are going to go in and open up the area.” He pulls over a table with the usual white towel on it and on top of the towel are things that look far worse than what you see at a dentist’s office. I mean some really scary looking long and misshapen sticks, dark brown in color and twisted into some of the weird shapes I have ever seen. He explained that he was going to use these to “open up” my urethra. Well, he began pushing up one of those weird shaped tools and I have never had such pain. It made my operation seem like a cake walk, I can take a lot of pain but this was over the top. I yelled out, “Stop”. Once I combed down I heard him say we won’t go any further with this and then the phrase, “Well, that just about never happens”. “You must have a low pain threshold.” It was not a good time or a good day. I had to schedule a “procedure” at the hospital. I had the “procedure” a few days later and was put under. The room had more equipment in it than a 747. Small room with high ceiling and stuff piled up over 10 feet tall. Quit impressive. I was asking questions and learning something when a nurse said she was going to start an IV with stuff to make me go out and was she right, I stopped in mid-sentence and went from wide awake to completely out in less than a second. When I woke up I had another one of those catheters in me again. I was told it would be in for just a couple of days. I had my first photo session in a couple of days and it ended up being on the same day as the catheter was to be removed. Remembering what happened to me last time, I was a little nervous about the removal. I was to meet the doctor at the hospital to have it removed around 11 AM and my job started at 3 PM. I went to the desk to check in at the hospital and a few minutes later my doctor comes down one of the many hallways leading to the reception desk. He said follow me and went into a bathroom and I said what is going on? No big deal I was told and the two of us went into a handicap stall, I dropped my pants and he took the fluid out of the balloon with a needle and then just pulled it right out. It all went well and he gave me some pills to take every 4 hours for two days to prevent infection. I went to the office and got my equipment (I’m a professional photographer) and went to the building where the shoot was to take place. Started the shoot and after an hour took a break and went to the bathroom to pee. It was a new place with state of the art lighting, all white tiled walls, chrome fittings and no other color in this big open bright space. I went up to the urinal, unzipped my pants and let it loose. Now you remember that I had not peed in open space since before the operation when it was just a trickle. Well, the urine came out with such force that I thought it might crack the urinal and there was a great splash which went everywhere and what I saw was deep, blood red not the usual light yellow color I was expecting. It was everywhere! It looked like I had slaughtered a cow in the washroom. I was stunned but had become somewhat of an expert at urine content and realized it was water and not blood. My heart rate went back down from 125 to 60!! Well I was glad there was no one else in the washroom and I spent 10-15 minutes cleaning up the mess, walls, urinal, floor, chrome fixtures, sink, you get the picture. I then composed myself and went back and finished the job. This is not the end of the story. Three weeks later the same closing of my urethra began to happen again and I went straight to the doctor’s office and said, “Now what do we do?” He used that phrase again, “Well, that just about never happens”. I then added a new line to my collection of one liners, “I’m here to give you something to take about when you go to the office and then home!” So, his solution to the problem was “the cold knife” and it is the only time I never asked about anything during all this prostate stuff. I just didn’t want to know what a cold knife was. So, I go back into the hospital for the “cold knife” procedure. Before I go into the room with all the gadgets, I am placed in a room with several other patients on gurneys and an elderly woman said she was going to start and IV. Sometimes my veins are not present and it is hard to find one to tap into. There were six tries on my right arm and finally the second try on my left arm worked. I had the procedure and joke about the deja du experience with the staff waiting to put me under. Same as before, awake one moment and in recovery the next. Now I got the catheter again and have to wait three days before it is removed. This time I go to my doctor’s other office some 10 miles away and much bigger than the one I had always gone to which was attached to the hospital I use. So I show up for the appointment and the doc is not there. The nurse who I have come to know quite well says that she will do the removal. It is ok with me, she has probably seen my dick for than my first wife. I lie down on the table and she begins to take the fluid out of the balloon and I notice that not much is coming out into the syringe. I think it is something like 10cc of fluid to get the balloon down to removal size. After several minutes we have maybe 1.5 ccs which leaves 8.5 cc to go. She tries again and after about three minutes has only got about another 1.2ccs. The balloon is still alive and well in me and now I’m starting to get a little scarred. Then I hear almost the same phrase only this one said by the nurse, “This just never happens” and I respond, “I’m here for your comic relief”. She says she will have to call the doctor to get some instructions. I said, “Well where is he?”, “Out playing golf”. Nice, I’m stuck here with a half filled balloon in my bladder and he is out getting sun on the links. Well, the nurse comes and says, “The doc says, [Well, that just about never happens”] and we should try again”. We try again and now we are both beginning to loose count as to how much fluid has been removed. It takes about an hour and the nurse says, “I think it is empty by now”. She goes to take out the catheter and I say, “The only one is going to try this one is me!” She agrees. I make the removal with sweat pouring off my brow as I am remembering what happened the first time after the operation when I XXX near passed out. It works and I am free of pain and the catheter!!!! I think the nurse went home and had a couple of straight shots of vodka. That is the end of “closing urethra” story. Next up, another “Oh No”.

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  4. 4
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Cancer is back/Recurred

    Oh No

    About 2 years after my surgery the PSA showed up and started to climb. I said what is going on, you told me you got it all and it was contained within the prostate? Basically his response in my words was, "XXX happens" not exactly the answer I wanted to hear. My heart went into my knees. It was almost worst than the first diagnoses. So of course my next question is what do we do now. The doc's suggestion was to send me for a full body scan where they inject you with some form of radium or the like, send you home and tell you not to go through Airport Security. You go back the next day and the whole thing takes about 6-7 hours and they say you can bring your own music because you have to lie still for most of the time. I made a lot of jokes to people I met telling them to not get too close to me as I was 'hot" in the nuclear sense. You got to have fun with this stuff or it will kill you before the cancer does. So, the tech guy who runs the machine is a nice guy but he does not stick around all the time. Up on one of walls I see a screen and when they dim the lights for most of the day, I see that it is me. Well, I watch as various parts of the body begin to light up and I know just enough to scare the XXX out of myself, big spot lighting up just about where my liver is. Oh XXX, now it has spread everywhere. That is the downside of knowing a little but not the whole story. I chat with the tech as the day proceeds and I try and get info out of him about what I see on the screen. He tells me very nicely that he is not a doctor and is not allowed to "read" or make comments about the procedure. We, I just can't leave it alone and keep up the conversation with some of my fun history and jokes to put him in a good mood and try and strengthen that "bond" between us. It finally pays off about the time that the whole liver is as bright as some of the lights in the room and I'm sure that I've got a few months to live. My best friend went from "I go a pain in my side" to dead having lost over 100 lb. in 4 months from liver and pancreatic cancer. The last time I saw him he weighed 78 lb.. and was burnt orange and couldn't talk. That was back in 1976. I was getting near to that "why me" thinking which drives you straight down. All my chit chat finally pays off and he, the tech, tells me that the liver is the organ that clears out all the radiation fluid and that is why it is all lit up. The death sentence has been postponed for now. I leave the hospital much higher in spirits and say hello to all the people I meet as I walk out to my car. A couple of days later, the radiation doctor reads the scans and says, "Well that doesn't usually happen" , "We can say for sure where your cancer has travelled to". They, the team, suggests that I go for X-rays of several parts of my body parts to see if they can nail down the spot or spots of cancer. I go for the x-rays and while I'm there getting undressed I come across several men with that hopeless attitude and hunched over look. I try and stay positive and try and get a smile out of them. It works a little bit but then I see them just have that depressed look as they leave. As you know x-ray procedures and about the easiest thing you have to go through these days. A few days later I meet with Doc the urologist. He tells me that I "may" have some cancer in the bones of my right arm, neck and spine. Funny, when they asked me if I had any pains, the only ones I had were in my left arm. I actually ask if by chance they got the arm picture reversed, and I got one of those, "who do you think you are questioning our readings", well I think I'm a physicist which most likely knows far more about x-rays than you do and besides, I'm a professional photographer who developed more negatives than you will ever handle and to say I never made a mistake is laughable. Well, I was getting my first good taste of some of the arrogance that hovers over the medical profession. Naturally, you don't want to XXX of your doctor so I kept my smart XXX mouth shut. My next question was, "Where do we go from here?" The "white coats" said, "Well, I think it is time for radiation". Oh great, more body destruction and what parts are we going to radiate? "It is going to be the pelvic region". They seemed to be knowing what they are talking about so I go into the bowls of the hospital where they have built a state of the art protron radiation machine, a very impressive item if you have never seen on before. But that is for my next installment under Radiation.

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  5. 5
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    External radiation (Proton beam)

    Radiation

    This, for me was one of the least painful experiences I have had along this journey. However, there is a caveat which I will get to in a minute. First, let's just spend some time talking about the joyous, not, radiologist doctor that I went to for an explanation about the procedure. I don't think I have ever come across someone with such a little sense of humor. It is a good thing that I only saw him twice in the 8 1/2 weeks I went through radiation treatment. I was never told about the lining of my bladder coming loose 3-6 years later. That was quite a shock, blood, blood and more blood and I had no idea of what was going on. Ended up in the ER after passing blood and clots(cross between painful and very uncomfortable) for 4 hrs.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  6. 6
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Body part/function

    Loss

    Prior to radiation I had been able to achieve a fairly good erection and climax. While in the "No Personality" radiation doctor's office, he explained that I would no longer ever to have an erection again. Hmmmmmm, die from prostate cancer or have radiation, I thought that was my only choice and the Urology doctor was in complete agreement. I had the usual lecture about what could happen and the one thing that hit was no erections anymore. HE WAS RIGHT! In retrospect I was I had not done the radiation as it really did not help much but made me impudent for the rest of my life. I am still angry about that. It took three months after the radiation was finished before I lost my erection for the rest of my life. I am OK with it and because of the hormone therapy I have no desires. However, I have run across several men who could not have an erection because of radiation, chemo, or surgery and they were all very unhappy people because they still had the drive. I was only like that for 2 years and I accepted it as I AM STILL ALIVE!

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  7. 7
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Lost loved one

    Loss

    I lost a man who gave me great times and who was best man at my second wedding. My then wife became extremely jealous of our relationship (no, it was not sexual) which was one of understanding and compassion. She drove a wedge between us and after a year we no longer spoke. I got rid of the wife as she turned out to be a psychopath and the marriage lasted 8 miserable years. That was 30 years ago. Last year on a hunch I type his name into FB and there he was, my old best friend Harry. We both had health/money issues which prevented us from traveling. Therefore we spent hours on the phone catching up and enjoying daily posts. Harry had been diagnosed some 7 years ago with liver cancer and they kept it under control with various forms of chemo. One day he sent me an email telling me he was now in stage 3, the next week his heart went to 26 beats a minute and they put a pacemaker in him. I spoke to him several times and he was still upbeat. A week later he was taken back to the hospital where 6.2 liters of fluid were removed and I spoke to him only for a minute as he was too weak to talk. I was making plans to drive down an see him when my finances permitted. He died 3 days later. Point being, make the most of what you have with your family and friends, enjoy them everyday. Be happy you are alive and do a kind deed for a stranger every day.

    0 Comments
  8. 8
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Cancer is back/Recurred

    Oh No

    The XXX came back after all that radiation. I was hoping and hoping but it came back as if it had never left. First just a point on the PSA scale and then up 2 points and then up 3 points. Then I had to face the fact that the fight was just beginning. Again, I relied on my urologist to tell me where we go from here.

    0 Comments
  9. 9
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    Well, after the radiation therapy only brought down the PSA for two years I was told the next thing is hormone therapy. I must say, it has been an interesting experience. The first thing that happened was that I was able to concentrate much better. I do a lot of computer work as the business of photography has changed 100% and nothing is the same anymore. Where I worked and spent a great of time in the darkroom for almost 50 years, I now work in a dimly lit room with several bright screens. One day, perhaps 3-4 weeks after my first hormone shot, I realized that I had no thoughts about sex and didn't have a desire to stop by one of my old "watering holes" on the way home for some uplifting conversation with friends and a new women once in a while. Rather go home and watch a little TV, cook a dinner for myself and hit the sack not feeling that I was missing anything. Then I began to realize that for the first time I could see myself alone at home forever and it did not scare me. I still dated once in a while but having to explain at some point that I was impudent was not a happy thought. As time went on I had less and less of a desire to "go chasing" to find a relationship. After all I had been married 2 1/2 times and most of my friends couldn't understand why I wanted a relationship at all considering the results of the 2 1/2. It all comes down to this, you can either live for life or live for sex. I lived for sex way too much in my life. Now, with the advent of me and hormone therapy I am living for life. Most interesting and far less stressful. I have gone so far as saying that I wish I had known about this stuff when I was in my 20's, 30's, 40's and 50's as I would have enjoyed my life more and have at least 5 million in the bank! Instead I worked myself to death(almost) and the money is all with the ex-wives! I have been in stage IV for the past 4+ years.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  10. 10
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Cancer is back/Recurred

    Oh No

    During the year of 2011 my PSA slowly began to rise despite the Lupron. Near the end of the year it was going up 30% per month. I was now taking a shot every three months for the last 1 1/2 yrs. The cancer has now found a way around the hormone therapy and my outlook is in question again. In November the PSA had risen to 81, December 105, January 161. I am not a happy camper. I started a new procedure and told the oncologist that I was not going to do chemo. I asked him if he had heard of or read Suzanne Somers book, "Knockout", he said he had not heard of it. I told him I would buy him a copy if he promised to read it within a month. He agreed.

    0 Comments
  11. 11
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Bone strengthening drugs

    Drug or Chemo Therapy

    Started Zometa for the past 15 months. Virtually no side effects and have no broken bones yet. I know that hormone therapy for men tends to weaken the bones.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  12. 12
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Decision Point

    With the PSA rising all of 2011 I knew that we would have to change or do something. I started talking about 3 new drugs which were announced in August 2011. I was faced with doing chemo or trying something new. We finally settled on Zytiga.

    0 Comments
  13. 13
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Bleeding

    Side Effects

    It was a nice fall day. After working the online dating sights for 8 years which only got me some crazy people and a 1/2 marriage, I decided to quit all the sites I was on and call it a day. Got really tired of explaining ED, growing breasts, will it ever work again, etc. As I was signing off of the last of 8 sites I belonged too, I got an email from that site. I ignored the request and continued trying to figure out how to quit Match.com. Not an easy thing to do. Finally, I gave in and answered the email and quit Match all in the same hour. On my last try I found someone who didn't care about the ED, cared about what kind of man I was and am. We hit it off well and had a lot of fun chatting and going to movies. I had known her for about 2 weeks and I had something happen which I don't remembered being told about prior to agreeing to radiation. I remembered everything I was told but not this one. I was working at the office as I do every day and about 3 PM I go to take a leak as I drink a lot of water, coffee, etc. I feel an unusual feeling like I'm going to pass a really big stone, pressure builds up and wham, blood everywhere along with "clumps of stuff". Almost needless to say, I got scared, never seen so much blood. It was not light colored as one doctor told me who I later fired. It was thick and with lumps! I went back to my desk and computer and thought I should drink some more water and wait to see what happens. About 2 1/2 hrs. later the same thing happened again and I called the doctor and headed for the ER. I also called my new girlfriend and told her if she wanted to keep the date we had planned then come to the ER and say "hello". I got a good humored ER female doctor who checked me out and said I did not have any of the "bad stuff" and she gave me a name for what I had which escapes me now, I said, "Well, in simple laymen terns what does that mean?" She smiled and said, "You have blood in your urine!". She really was very comforting and told me I should go and see my urologist the next day for a more in-depth study of what was happening. I did just that, and found out that the lining of my bladder just shed itself which is normal somewhere after 2 to 7 years of radiation. I said, "no one every told me that" and he said "Oh yes they did you just forgot", another negative mark against the doctor. He gave me a prescription for pills i would have to take for the rest of my life. A one month supply was $410! I got the pills and started taking one every day. In the mean time I went on the Internet and researched what was going on and found there were some other alternatives to this pill and I ordered some from Amazon.com and a one month supply was something like $12. I don't have the bottle with me and can't remember the name. It is now 1 1/2 years later and I only had two more "blow outs" neither of which were as bad as the first one. I also have not taken any pills for this condition for the past 6 months. Time will tell whether I need the pills again. I was getting XXX at my urologist for the lack of information and telling me I was told about this happening which I was not. Shortly after all of this my PSA was starting to go up as the cancer had become hormone resistant. I called the urologist who had been giving me the Lupron shots and asked him what my prognosis was. He got really snippy with me on the phone and said, "What do you want from me, I'm not a fortune teller?" I said I wanted to know what happens now and what are my options. He said, "Using a bell curve, out of 100 people like you 1/2 will die within two years and all of you will be dead at the end of 4 years." I said well thanks a lot for the info. He told me I should go to a oncologist which was part of "his group". I did not go to one of the "group" as that was the same "group" who never told me about the neat bleeding side effects of radiation. I called another doctor friend who was not a part of the "group" and worked out of her own office as a super duper cardiologist. She knew me quite well as we dated for a while and I had met all her staff and done photos of her son. She said, "I have the perfect match for your personality and science mind, you have to call him now!" OK, Lynne, what is his name? "Doctor Cilley" see says. Come on Lynne, stop pulling my leg, really, what is his name?" "Dr. Jeffrey Cilley and you have to go see him, it is a perfect match, you will love him!" She was correct, we are a good match and he is my oncologist and he gave me a new urologist to see to check me out, a woman, who looks like she just go out of high school and it quick, funny and no BS!

    0 Comments
  14. 14
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Targeted therapy

    Drug or Chemo Therapy

    Well, I started Zytiga in December and the biggest hit was the cost, $200/day! That included 4 - 250mg pills taken each day. I simply said, "I don't have that kind of money". The office that my oncologist works out of went to battle for me and found a fund in Texas that would pick up the difference in what my insurance would cover ($3700) which meant that I could get the drug and I started taking it in early December 2011. With this drug you have to wait at least 4 hours after eating anything and not have any food or drink (except for water) for at least 1 hour after taking the pills. The fund said they could cover the first 2 months of treatment. I then started looking for other sources of income as my business is in the toilet for the last 3 years and I'm just barely making office experiences much less finding an extra $2000/month for the drug. I had lost all my savings and monies back in 2000 to a scam which took 2 1/2 years and emptied me of $1.4 million. I never was able to recover from it and pre 2000 days I would have had no problem coming up with $2000 or $4000/month for pills. Now, it is all I can think about. I asked quite a few people and found out a lot I never knew. My state helps out people like me but not when you are taking tier 5 level drugs. It took weeks to get a final answer. In the meantime I applied for food stamps and found out that because I am still trying to maintain a business, even though it has been loosing money for over a year, I would not be eligible for food stamps. In order to get any benefits from the state I would have to go on Medicaid and give up ever trying to make a decent living for my self, I would be living off government handouts. That was just not an option I was willing to take. I applied for several funds that help people like me. I was finally accepted by one of them but then told that the fund did not have the monies at the present time. I asked them when they thought they would be funded so I could get the coverage of the Zytiga? They said, "It may be tomorrow or in a couple of months". I went back to my BlueCross Rx insurance plan. I found out that BlueCross Rx would cover all but $1246/month. Well that is a XXX of a lot better than $6000 or $2350. Now I was down to something that I might be able to raise. I switched health plans to try and lower my out-of-pocket costs. I will not mention the company but they have great sales people and said they could beat the $1246/month I was looking at. A week later after I was already enrolled in their plan, I was informed that the best they could do for me was $1755 out-of-pocket cost per month. You usually have a grace time to get back into an insurance plan once you have cancelled and I re-enrolled in BlueCross Rx. I went to the BCRx website again and looked at tall the information. I had done this at least 10 times before. All of a sudden I saw that I could enroll in an online pharmacy which would sell me the Zytiga at a cost of $1242/month!!!!!!!!!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    1 Comment
  15. 15
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Lowered the cost of treatment

    Celebration

    When I started out using Zytiga I was told it would be $6000/month. After 2 months of searching, cancelling insurance, re-enrolling, going back and forth with various plans and 10's of phone calls, I was able to get the drug for $415/month!!!!!!!!

    0 Comments
  16. 16
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Cancer is back/Recurred

    Oh No

    I have the new drug, Zytiga and after 3 weeks on the drug(end of December 2011), my PSA went from 64 to 81. After another 4 weeks my PSA was up to 161! I was really getting depressed about this whole thing. Finding a drug, find a way to pay for it, and then seeing that my PSA is going up instead of down. I was XXX. What the XXX is this cancer stuff anyway? All I ever get is, "It usually does not work this way". I sick of all this. I am working 7 days a week just to keep up with the bills and pay for my meds. I have to admit that I was beginning to feel that my cancer was like a run-away train. In the middle of this, a long time close friend of mine went from stage 2 to stage 3 liver cancer. We talked a lot on the phone. He had had liver cancer for the past 7 years. He had a lot of chemo and all of a sudden his heart was giving out. His heart rate was down to 28 and they rushed him to the hospital and installed a pacemaker. Harry went home for less than a week and went back in to have 6 liters of fluid drained out of his belly. Harry die 5 days later never leaving the hospital. He was one of the sweetest guys I ever knew. He live 1000 miles away and I was planning to put money aside to visit him in June of 2012. This is when I got the news that my PSA had gone from 81 to 161. When I went to see my oncologist for my every four weeks Zometa infusion we had a long talk about chemo. I told him it is not for me. Except for certain types of cancer it just takes the quality of life down to a point which is unacceptable to me. I would rather have a few good months than 6 months of being slowly killed by poison drugs. I have personally seen too many people live the last months or years in a state I do not wish to be in. My oncologist and I had a long talk and I told him about Harry and how I did not have the funds to visit him and hoped that he would hold on for 3 months until I could visit with him. I started to cry which is something that I just never did until six years into this fight with cancer. He asked me if I was afraid of death, I told him I had already died once and it was a very pleasant experience once I was gone. I was gone for about 2-3 minutes in an emergency room from food poisoning. I said to him that I was crying because all the friends, mostly male, who meant something to me had died with in the last 20 year, there were so many of them and most went with cancer of a variety of forms. I just getting tired of one lose after another, after another, after another. I have one close friend of over 20 years. The others are all gone. Now I get the 161 PSA reading and I'm starting to wonder if I am going to lick this thing. It was a Friday when I found out about the 161 PSA which was a reading from the prior 4 weeks test. Harry dies on Monday and on Tues. my oncologist sends me a text from his iPhone.

    0 Comments
  17. 17
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Cancer is shrinking

    Celebration

    Too soon to really know but the test read that my PSA had gone down from 161 to 95. It will be some 2 weeks before the next PSA test. Oh, I was informed by the oncologist's office, as I signed to form so I could get the test, that I might be charged $161/PSA test as the government deems them useless. Hmmmmmmm, I thought a PSA test was a lot less than a full body scan, but then, what do I know! I will keep you informed as the story unfolds.

    0 Comments
  18. 18
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Bone fracture or break

    Side Effects

    Got some food caught in my throat from a burp. Had a lot of coughing for about 15 minutes til it got cleared. Ended up with a fractured rib. Painful, no pain if I move in the right way. No deep breathing!!!!! Standing and working almost no problem. Lying down to sleep, lots of problems, wide awake if I roll over in my sleep. Slowly healing (4 weeks). Did not go to the ER, been there too many times for more serious stuff.

    0 Comments
  19. 19
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Decision Point

    Going for another PSA test today along with my Zometa infusion which is every 4 wks. Also have been on Lupron for almost 5 years and its effects are wearing off so started Zytiga 2 1/2 months ago. Today will discuss the adding of Provenge to my therapy. I have been lucky with just weight gain and a new set of breasts! So far the only thing that has been causing trouble is I have become allergic to many foods I grew up on. Eat the wrong thing and I'm in real pain for 2-3 days. It is a small price to pay for being alive. The battle started in Nov. 2002 and I'm happy to still be here. When people ask me "How are you?", I respond "Any day I get out of bed is a good day!"

    1 Comment
  20. 20
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Decision Point

    30 March 2012 went to oncologist and got my 3 month Lupron shot and decided to go ahead with the Provenge along with still taking the Zytiga. That means I will be a "three-fer!". Lucky me.

    0 Comments
  21. 21
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    Been on Zytiga for 2 1/2 months and my PSA went from 111 to 95 to 96.5. Also have been on Lupron for 4 1/2 years and I am now on a shot every three months(just had one). Will be starting the Provenge treatment next month while continuing along with Zytiga and Lupron.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  22. 22
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Tingling in lips, face and hands

    Side Effects

    Had my first half of my first Provenge treatment yesterday. The worst part was lying still and not being able to move my arms for 4 hrs! But, they took such good care of me, I wouldn't have minded staying another 4 hrs. Great nursing staff (2) and very professional. Talked, chatted, laughed our way through the whole 4 hrs. Side effects were very slight chill(but they provide an electric blanket which was wonderful) and tingling in my lips and face for which I got tums and more tums, the flavor type, Yummmmmm! Since you can't move your arms they pop them in your mouth, what service!!!! Slightly tired when done but by the time I finished up and walked to my car, felt as good as when I arrived. Infusion on this coming Friday 13 April. I have a black rescue cat and she assures me it is going to be a good day for me. More later.

    0 Comments
  23. 23
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Fatigue (tiredness)

    Side Effects

    On Friday 13th of April I went to my oncology doctor's office for the infusion of the white cells that were taken out on Tues. and sent to New Jersey for "processing". Very interesting stuff this Provenge. You can go to the following websites to get more info on Provenge: http://www.cancercenter.com/prostate-cancer/immunotherapy/provenge.cfm?source=GOOGLESW&channel=paid%20search&c=paid%20search:Google:Google%20-%20Southwestern%20Core%20Terms%20%28New%29:Phrase:provenge:Broad&OVMTC=Phrase&site=&creative=12216710961&OVKEY=provenge&url_id=147541135&adpos=1t2&gclid=CNGawPG1uq8CFU3UKgodFSKyjg http://www.provenge.com/hcp/about.aspx It took 1/2 hr. to get checked in and then have a line put into my arm to accept the Provenge trained white cells. It took about 40 minutes to get it all into me. You then have to wait at least 1/2 hr. with the line still in to see if you have any bad reaction to the infusion. I had none. I was there at the doc's office for about 3 1/2 hrs. I then took a bus to the train and waited for about 40 minutes while sitting on a bench. I began to sweat a lot and then slowly got tired. By the time the train ride got me back to Highland Park I was yawing all the time. Went to the office and worked for about 2 hrs but got tired and had to go home. Was not able to sleep well and could not get up at my usual 6:30-7 AM. Finally made it up around 10:30 AM and felt like going back to bed. Pushed myself to go to the office and spent the afternoon trying to work. Felt depressed and tired. Went home early (5PM) had some dinner and was in bed by 7:30 PM. Woke up every 2 hrs and had very little sleep. The tiredness continued into Sunday but then I began to feel like I had some energy. My daily shower helped to open my eyes and I was off to the office by 8:30 AM. As the day went by I began to come back to life and the depression started to withdraw. Slept much better on Sunday night and am back to 90% today, Monday. I was told by the nursing staff at the doc's office that it is usually the second infusion where the reactions and side effects show up. Something to look forward too!!!!!!!!!! I choose not to ask what I was to expect, I would rather be surprised this time, don't want that useless worry. I will check-in with you all when I go for my 2nd "blood out/blood in" treatment about a week from now.

    0 Comments
  24. 24
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Fatigue (tiredness)

    Side Effects

    I went for my second Provenge Session. I happened to choose the American Red Cross Center on 2200 W. Harrison, Chicago. All went well with the first half where they remove the white cells and put the blood back in the other arm. Had very little reaction to the procedure. You can find a video of this at the following location: http://www.youtube.com/watch?v=sg4VaCTj2mM On the following Friday which is three days later I went to my oncologist's office to have the white cells put back in. All went well and when I left I felt find. The bus to the train I was find. During the train ride I began to get tired. I got to my office and stayed an hour and left for home which is 20+ miles away. When I got home I made a quick dinner and was in bed by 8PM. I remained in bed all of Sat. and Sun. and it was an effort to go to the kitchen(15 ft.) to get some soda. I began to feel I had energy on Monday and by Wednesday I was functioning at full speed. Considering what others have gone through I feel quite lucky. So, I had this week off and go back for my last treatment next Tues. at 8AM.

    0 Comments
  25. 25
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Relationship

    Loss

    I had a good loss. The woman who begged me to move in with her 1 1/2 yrs. ago, when my home was going into foreclosure came back from a 3 week extended vacation and said I was the reason for her unhappiness and inability to loose weight! Next words were, "Cats have to go out of here today". I said, "would have appreciated if you gave some advance warning!". Reply, "I wanted to tell you in person!". I had rescued a cat at my office one morning when it was "0" outside and going down to 20 below that coming night. The cat was happy at my office. My roommate begged me for almost two months to bring the cat home. So I did. The other cat was a 2 month old rescue from someone having thrown it out of a car window along hwy 120 when my partner at the office was on her way to photograph a wedding and pulled over and along with her assistant captured the terrified cat. She also informed that I would be gone in the next 5 days and could sleep in her son's room(yes, a live at home, after divorce, 37 yrs old with a 12 year old son coming every weekend to play video games, eat pizza and watch DVDs. What was I thinking when I moved in there???????? So, by 3:30Pm with the help of some good friends I was completely out of their with my dog (a rescue Shz-Tsu 5 Lb wonder) and the two cats. So much for understanding and etc. Wow, what a low class person I chose to move in with. Glad it didn't happen the weekend before as I was in bed for two days after my second Provenge treatment. Stay tuned for updates. P.S. Went for my 3rd Provenge 1st half treatment today. It was a 8AM and I had forgotten to take my blood pressure pill. Without the pill it was( I always get this backwards) 72/140 the lowest it has been since I moved in with "THAT WOMAN". Amazing what stress can do to one!!!!!!!!!!!!!!!!!!

    0 Comments
  26. 26
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    Fatigue (tiredness)

    Side Effects

    I had the final phase of my Provenge treatment(Infusion of my own white cells) on 11May2012. I also had a Zometa infusion right after that. About 15min. after the Provenge infusion was finished I began to get the chills and then really got cold. A new friend of mine, Larry was on the same Provenge infusion schedule as myself and we took chairs next to one another for all three infusions. Larry had a much more intense reaction and he got really cold and had to receive some drugs to calm him down and two blankets plus a electric pad to try and keep him warm. He was really suffering for about 1/2hr and gradually stopped the teeth chattering and shaking. I finally left as he seemed to stabilize and began to warm up. I took a bus and a train home. About half way along on the train (2 1/2hrs.) I began to get really tired. By the time I exited the train I was really tired and it was hard to walk. Did not feel light headed, just really tired. I walked about 1000 feet to where I have been staying for the past week and went right to bed. I was exhausted and very, very cold. I put on three blankets and on top of that had an electrically heated blanket. I noticed that my cracked rib which had been at a pain level of about 2 had risen back up to 6 on the 10 point scale. I downed 3 Advil when I arrived home and then three more about 5 hrs. later. About 2 hrs after I got in bed, I began to get warm. I slept on and off and had some wonderful caretakers who brought hot food, water, pop and in the end, popcorn. By 10:30PM I began to feel warm and by 1AM some of the signs seemed to go away. I woke up again about 3:30AM and seemed to feel OK. I figured I was dreaming or still kind of drugged out. At 6:30AM I got up and walked around, had a snack and some water and felt fairly normal. Wow, after what had happened after my last infusion I figured I would be wiped out for at least 4 days and here it was less than 24hrs. and I was felling pretty normal and the cracked rib pain was back down to about a 1. I got up and showered, shaved, got dressed, drove to Denny's for breakfast and am now at the office! You just never know how things are going to turn out.

    0 Comments
  27. 27
    • MichaelV
    • Experience with Prostate Cancer
    almost 5 years ago
    MichaelV's Avatar

    PSA is going down

    Celebration

    Over the last five months, having had my three month Lupron shot, Zytiga pills every day, Provenge treatment, my PSA has stopped going up and peaked at 110. Then for the past three months it has dropped to 101, then 98, and now 85. Will keep you posted. So far I have no pain that can be ascribed to my cancer.

    1 Comment
  28. 28
    • MichaelV
    • Experience with Prostate Cancer
    over 4 years ago
    MichaelV's Avatar

    Cancer is shrinking

    Celebration

    I go to the oncologist every 4 weeks for Zometa infusion. I also get a PSA test and every three months a Lupron shot. I have been on Zytiga since Mid-December 2011 and had a Provenge treatment which ended about a month a go. My PSA peaked back in December at 111. Since then it has slowly gone down. Last month it was 85 and this month is dropped to 75. I still have no pain except for the one in my back and the jury is still out on that one. It has gone away and the thinking is if it was spawned by a tumor(s) it would persist. We are going back and checking older MRI's as I injured it 38 years ago and if I sleep on a bad bed(had to do that for 5 weeks) the pain comes back all the way up to a 9+ and that is when I go to drugs! I have also changed my diet and am slowing losing the 40 Lbs I gained when I started on the Lupron shots.

    0 Comments
  29. 29
    • MichaelV
    • Experience with Prostate Cancer
    over 4 years ago
    MichaelV's Avatar

    Fatigue (tiredness)

    Side Effects

    I presently have a Zometa drip/infusion every 4 weeks, Lupron shot every 3 months, taking Zytiga since Dec.2011 and had a Provenge treatment which finished on 11 May 2012. Since then I have had a slow loss of energy and now do not seem to have my usual "get up and go". I have changed my diet, eliminate coffee, diet drinks, 95% of the sugar I was using, eat more walnuts nuts, raisins, almonds and dried cranberry's. I have fish once or twice a week, no red meat, lots of green tea, and almost no bread products. I still do frozen and fresh vegetables and drink orange juice and V8 Spicy. I just have not had the usual energy since I finished the Provenge treatment. I cracked a rib way back in the middle of April and it finally healed and I have no more pain from the break. I have had some trouble with my back and it appears to be an old injury (38 years ago) which has acted up as my place of residence has change three times in the last 3 months. I am now sleeping on a roll-away bed in my office (don't ask, it is not a pleasant story!). I have read several books on cancer and one that really hit me was called: Cancer: Step Outside the Box. http://www.amazon.com/Cancer-Outside-Ty-M-Bollinger/dp/0978806506/ref=sr_1_1?s=books&ie=UTF8&qid=1342453846&sr=1-1&keywords=cancer+step+outside+the+box It has caused me a great deal of turmoil with how I am handling my cancer. It completely goes against the "common, brainwashed thinking we have all be indoctrinated with over the last 80 years. Many nights I went to bed much more confused about what is and what isn't than when I started my day. It is a very damning book with regards to the "standard way" we have been brainwashed to think about cancer and its cure. It points out the HUGH amounts of money that are spent on each one of us with this insidious disease and we(95+%) do not get cured, live with all the treatments which cost billions of dollars each year and then die. The war on cancer has had only three real successes in the last 80+ years. People like myself are told to live with a chronic disease which appears to have no cure and of the methods of treatment weaken the immune system to the point where the patient dies from some other inflection like pneumonia, kidney or heart failure, etc. The one thing I have learned that each person has his own, private battle with cancer. There are so many variables with our body chemistry that is it all but impossible to figure out why some procedures work for one person but kill the next. Yet, there are many people over the last 100 years who have claimed to "cure" cancer and they have papers, studies, testimonials to backup all that they had said, yet they are treated as "outcasts" and in many cases jailed, fined, and/or run out of the country. Many of these people accepted patients after their regular doctor/oncologist sent them home to "get their papers in order". My present oncologist knows to never use that phrase with me. So here I am in some sort of limbo not really wanting to go to Mexico or some other non-traditional medicine as I do not have the money to cover the treatments and my three insurance companies will not cover any non-traditional treatments. Perhaps that is where my tiredness comes from since it takes a lot of energy to keep the cancer ball up in the air. I now have to go back to my failing business which has seen a 90% drop in revenues over the last 5 years. I have been looking for something else to fill in the gap of my SS check as I lost all of my retirement money (1.4 million) to a 2 1/2 year scam/swindle and never recovered from it.

    1 Comment
  30. 30
    • MichaelV
    • Experience with Prostate Cancer
    over 4 years ago
    MichaelV's Avatar

    PSA is still dropping slowly

    Celebration

    Was just at the oncologist's office for my every four week infusion of Zometa. I get blood work done now and will chart my particulars every month to see what changes occur. My PSA over a 4 week period dropped from 76 to 69. I am on Lupron every three months and have been on Zytiga since mid December. My PSA back in December 2011 was 111 and has continued to slowly drop every month. In the middle of all that I had a Provenge treatment starting in April and my last (third) infusion was on 11 May 2012. So far there is no information about how much it may have helped. I have posted a question about anyone having any info on Provenge benefit but have received no hard fact information. For the cost of the procedure and time taken by all, it would seem that more info would be available. I continue to search for info with no success so far.

    0 Comments
  31. 31
    • MichaelV
    • Experience with Prostate Cancer
    over 4 years ago
    MichaelV's Avatar

    PSA slowly going down

    Celebration

    Was just at the oncologist's office for my every four week infusion of Zometa. I get blood work done now and will chart my particulars every month to see what changes occur. My PSA over a 4 week period dropped from 69 to 58. I am on Lupron every three months and have been on Zytiga since mid December. My PSA back in December 2011 was 111 and has continued to slowly drop every month. In the middle of all that I had a Provenge treatment starting in April and my last (third) infusion was on 11 May 2012. So far there is no information about how much it may have helped. I have posted a question about anyone having any info on Provenge benefit but have received no hard fact information. For the cost of the procedure and time taken by all, it would seem that more info would be available. I continue to search for info with no success so far. As of 31 August still no more concrete info on Provenge.

    0 Comments
  32. 32
    • MichaelV
    • Experience with Prostate Cancer
    over 4 years ago
    MichaelV's Avatar

    Cancer is shrinking

    Celebration

    I continue to go for a Zometa infusion every 4 weeks and also a Lupron shot every 90 days. I also have been on Zytiga since December 2011. Since I started Zytiga( 4-250mg pills a day) my PSA has slowly dropped every month from a high of 111 to its present level of 49 as of 28August2012.

    1 Comment
  33. 33
    • MichaelV
    • Experience with Prostate Cancer
    over 4 years ago
    MichaelV's Avatar

    Cancer is back/Recurred

    Oh No

    I go every 4 weeks for my Zometa shot, every 12 weeks for my Lupron shot and I take 4-250mg Zytiga pills along with 2 5mg Prednisone pills every day. My PSA the last month was 49 and now 4 weeks later it is 56. It is the first time in 10 months that it has gone up. We started at a PSA of 110 last December 2011. I have changed many of my eating habits and have eliminated many but not all of the "bad" type of foods. I still drink vodka two or three times a week or some white wine. I now have cut that back to a max. of 2 times a week either wine or vodka. Since I have eliminate 99% of the foods and liquids that I have like for the past 55+ years. Also, my primary oncologist is moving out of a large practice to join a local hospital oncology staff. As much as I like all the nurses and staff where I have been going every 4 weeks for over two years, I am going to follow him to the new hospital. I'll let you all know what happens in the next few weeks. I have slowly been eliminating much stress in my life but having to live in my office after loosing my house to foreclosure has not helped things. My business is off 90%+ from the previous 3 years and I'm finding it difficult to come up with all the doctor and pill payments. Never thought I would end up like this after having made $300,000+ a year for the past 20+ years. I still have a positive outlook on life and maintain that you MUST make the best out of each day. Yes, I now play the lottery for $2 twice a week. Life goes on wither you do or not. That is the lesson I have to pass on. I am still a happy guy and I plan to stay that way until my light goes out. Oh yes, since I don't go many places for entertainment anymore I had some unexpected entertainment two weeks ago. It appears I got some bad roasted chicken and after a full night of sickness from all ends, my business partner came early in the morning and took me to the ER. I spent two days in the hospital and after the first 4 hrs. had a great time and didn't really want to leave as the food was better than most restaurants in the area!!!!!!!! Go figure.

    1 Comment
  34. 34
    • MichaelV
    • Experience with Prostate Cancer
    about 4 years ago
    MichaelV's Avatar

    Cancer is shrinking

    Celebration

    I go every 4 weeks for a Zometa infusion and also get a PSA test. Last time I went the PSA had gone from 49.7 to 53.9. My test results are always a month behind. When I went this last Friday, the PSA had gone back down to 49.5. I am still on Zytiga as my major way of handling the growth of tumors and I get a Lupron shot every 90 days. My oncologist is leaving the practice he has been associated with for the past 15 years and is setting up a new community cancer center at Swedish Covenant Hospital on the Chicago NW side. It will be a complete operation with a coordinated effort with all aspects of cancer treatment including nutrition, something I have been beating him up with for the past 1 1/2 years. YEAH!!!!!!! In the practice he is leaving which is very well established for the past 60+ years. non of the doctors even said hello to me, acknowledged me in any way or had any other communications with me over the two year period I was there every 4 weeks for over two years. Therefore, when the letter came to ask me to stay and pick one of them to carry on my treatment I said, "No Way!!!"........... The nurses there are EXCELLENT and caring but the doctors leave something to be desired.

    1 Comment
  35. 35
    • MichaelV
    • Experience with Prostate Cancer
    about 4 years ago
    MichaelV's Avatar

    Fatigue (tiredness)

    Side Effects

    Ever since I had the Provenge treatment(no noticeable effect on my PSA), I have had a lack of energy and have little depth to physical exertion. I can go hard for 20 min. but then feel like resting. If I go for 1 1/2 to 2 hrs. of physical exercise of any level, I end up having to lay down and rest for several hours and in one case for an entire day before my strength came back. Pushing it further has had me end up with chest congestion/cold and pushing beyond that point(only did it once) landed me in bed for 5 days with a painful cough and dizzy head. It could be normal for some but I have always had enough energy to work a full day on my feet. No more. In speaking to my oncologist, he confirmed that several others who had the Provenge treatment suffered from the same thing. I don't have any answer. I eat healthy and try and get 8 hrs of sleep but lately, have a hard time getting to sleep and sleep for 2-3 hrs and wake up and then it takes a good hour to fail back to sleep. I still take Zytiga everyday, first thing in the morning and every 4 weeks go for an infusion of Zometa and every 90 days get a Lupron shot. I do not have my PSA from last month as my oncologist switched companies(hospitals) and he is trying to get the records from my December visit.

    0 Comments
  36. 36
    • MichaelV
    • Experience with Prostate Cancer
    about 4 years ago
    MichaelV's Avatar

    Cancer is back/Recurred

    Oh No

    Ever since I had the Provenge treatment(no noticeable effect on my PSA), I have had a lack of energy and have little depth to physical exertion. I can go hard for 20 min. but then feel like resting. If I go for 1 1/2 to 2 hrs. of physical exercise of any level, I end up having to lay down and rest for several hours and in one case for an entire day before my strength came back. Pushing it further has had me end up with chest congestion/cold and pushing beyond that point(only did it once) landed me in bed for 5 days with a painful cough and dizzy head. It could be normal for some but I have always had enough energy to work a full day on my feet. No more. In speaking to my oncologist, he confirmed that several others who had the Provenge treatment suffered from the same thing. I don't have any answer. I eat healthy and try and get 8 hrs of sleep but lately, have a hard time getting to sleep and sleep for 2-3 hrs and wake up and then it takes a good hour to fail back to sleep. I still take Zytiga everyday, first thing in the morning and every 4 weeks go for an infusion of Zometa and every 90 days get a Lupron shot. I do not have my PSA from last month as my oncologist switched companies(hospitals) and he is trying to get the records from my December visit.

    0 Comments
  37. 37
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Other

    Drug Therapy or Medication

    My last PSA was 88 up from 81. I am still on Zytiga and Lupron (every three months) to help keep the PSA down. Because it is 2013 and this was my first purchase of Zytiga, I got hit with $3450 bill after all my insurance coverage. I have had a lot of muscle pain over the last few months. I have been taking 600 mg. three times a day of Advil to relieve the pain. It works for the most part. I still have very little reserve when it comes to physical activity and tire out after 20 or 30 minutes of lifting heavy objects or going up and down stairs carrying boxes. I have never been so weak in all my life. It really sucks. My muscle mass has gone way down over the 5 years I have been on hormone therapy.

    1 Comment
  38. 38
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Cancer has spread/Metastasized

    Oh No

    In the past two months my PSA has gone from 80 to 118. I am still on the Lupron shots every three months(6 years) and on the Zytiga pills which I take every day. The Zytiga kept the growth at bay for about a year. I have just finish an MRI, a bone scan and a CT scan. I will find out the results and where I go from here when I meet with Jeffrey. my oncologist this coming Thursday. The only pain I have is a sciatica nerve pain for the past three months which comes and goes. Usually Advil takes care of it.

    1 Comment
  39. 39
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Money

    Oh No

    Since my career went down the drain and I have used up all my savings, I had to asked my sister for the three months of Zytiga payments which with insurance was $3260. This happens at the beginning of the year when I hit the "doughnut hole" (I really hate that expression).. The list price for the drug is just short of $6000/month. Without insurance it would be impossible for me to afford my treatments. I never thought in my wildest dreams that I would find myself living in Section 8 housing (lost my home to foreclosure 3 years ago) and having only my SS payment to keep me alive. My business as a professional photographer started going down hill back in 2003 and I kept borrowing against the house thinking it would come back. It was a bad bet but I loved the business and that is that. What i have always known and what I live by is to keep a positive attitude, that is how I have gotten through all of this and continue to function everyday.

    0 Comments
  40. 40
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Had to decide on more pills (similiar to Zytiga which has lost its effect) or chemo.

    Decision Point

    I had to have a series of tests (MRI, CT scan, Bone scan) to see just where the cancer had spread to as the PSA was now rising at an alarming rate. The results of the scans are as follows: It has been know for years that I have tumors growing on my bones, did not know exactly where. Found out that my scans show there are turmor growths on all the places which have a good blood supply; head, back, rubs, legs etc. My scans looked like Swiss cheese! The good news was that I still had no organ or lymph nodes involvement. This is a good thing. Now, we had to decide what course to take.

    1 Comment
  41. 41
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Had to decide on more pills (similiar to Zytiga which has lost its effect) or chemo.

    Decision Point

    I had been against chemo since before I got cancer. My oncologist has known this from the beginning. Well, after a long conversation and much info gotten from the web and another friend who went the chemo way when I went the Zytiga way, I decided to to the chemo way with Taxotere. After further discussion I decided to go once a week rather than every three weeks. This was not an easy decision and I had thought about it since I found out my PSA was shooting up again. I keep seeing the picture of all the tumors on my skull, spine, shoulders, ribs, legs, etc which makes me look like Swiss cheese. I just can get that image out of my mind. Well, this is just another thing I will have to adjust to as the journey continues with me and the insidious disease. I still will maintain my positive attitude 99% of the time. I would not be honest with myself if I didn't admit that sometimes it just gets to me we I realize all the close friends I have lost to the Big C. Well, onward and upward (no pun intended!!!!).

    2 Comments
  42. 42
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I just finished my first infusion. The Doc(Jeffrey) as much study decided with me that every two weeks would work better and be just as effective. I had some "pick-me-up" infusion of something similar to Prednisone and some anti-nausea solution and then the Taxotere. Too soon to tell what reaction I had. At the end of the infusion my blood pressure was down to a 2 year low and I feel asleep during the whole thing. I guess I resolved my concerns and just decided to "take life(chemo) as it comes". I also passed out a few copies of one of my favorite comic routines: Craig Shoemaker - The Lovemaster. Comedy has helped me through all of this and I intend to share my vast collection with my doctors, nurses and staff as I travel through my chemo trip. I'll try to keep my conditions and reactions to the drug updated.

    Easy to Do: Agree
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    2 Comments
  43. 43
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Fatigue (tiredness)

    Side Effects

    Just got my first infusion of Taxotere on Wednesday afternoon. When home about 3 PM and felt fine. Had my usual half sleepless night and about 5 AM started feeling really tired and yucky. Stayed in bed all day, took some Advil and about 7 PM it all went away. Went back to work today and feel about 85% here. It effected me a lot less than I thought it would. As I mentioned before, we decided to do the infusions every two weeks instead of every week. Oh yes, the Prednisone drip that they gave me took away all my "old age pains" for a good 24 hours. It was a great relief even though it was short lived.

    0 Comments
  44. 44
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Pain

    Side Effects

    After much debate I decided to go ahead and try chemo, specifically Taxotere. I was told as chemo this is a milder one. We decided to do it every two weeks. The first infusion went well and I drove home and felt quite good. About 5AM Thursday, the next morning, I began to notice some pain in my legs. I was tired and stayed in bed most of the day. That night I felt somewhat better and the next day, Friday. I went to the office but did not get much accomplished and I had a general overall achy feeling and was generally tired all day. When home and took some Advil. Did not feel great but could live with it. By the next morning I was in pain all over, chest, legs, arms, hands, etc. I was expecting to have all slowly go away but I kept feeling worse and the pain kept going up. We were now at a level 4-5 and the other thing was I was constipated for the first time in 45 years. I was becoming very uncomfortable. At this point it had been about 5 days since my bowels had moved at all. Starting on Friday night I started taking Ex-lax, Dulcolax, and Magnesium pills. By 5PM, Saturday, the pain was increasing up to 5-6 all over my bone frame and my stomach was also hurting. By 7PM my good friend Jennifer came over to my home and took me to the ER. I was getting weaker all the time. I had some X-rays and a shot of morphine. The morphine took the edge off and brought the pain down to a 2-3 which is livable. However, in less than an hour the pain meter was raising again and when it got to a level 6, I got another shot of morphine and the doctor on duty decided to admit me. Because of what I am going to say about the next 4 days, I will leave out the hospital name and the name of any attending physician. When I was admitted to the ER I told the staff the name of my internist and more importantly the name of my oncologist who was not on staff at this hospital but practiced about 1/2 hr. away at another hospital. I gave the staff his full name, hospital he practiced at, the telephone number of the hospital and the direct line to my oncologist. I made it clear that I had just completed my first round of chemo and that what was going was most likely related to the infusion 3 days before. I asked that my oncologist be contacted ASAP. Now, after being admitted I was put in a room and given some pain medication but it did not work. I was also hooked up to an I.V. from Saturday night until Tuesday around noon when I asked it to be removed. I was also asked for the name and info of my internist which I gave to the admitting staff before entering into the ER. Sometime after 1 AM my guts contracted and the pain went to a 9 and I headed for the bathroom. I don't have to go into detail but after 1 1/2hrs. I had hit the head three times and vomited 3 or 4 times (lost count). The pain in my gut went away and I was in bed trying to sleep and receiving medication which I cannot remember them all. One thing I got every 10 or 12 hrs. was a shot in the stomach to prevent stroke or blood clotting. By morning the pain had a gain risen up to a 6 and it was all over and just wearing me down. I remember them giving me Oxycodone and Norco. This would only slightly reduce the pain in my legs and arms. All four days I received anti-nausea drugs and anti-constipation drugs. I kept telling the staff, half-hearty I admit, that I was not nauseated and I had not had any food for two day except popsicles. Never the less I still kept getting the medication for something I did not have. Next, one of the hospital doctors was assigned to my case. She came in Sunday morning and asked me a number of questions. I explained to her that I believed that the problems I was having were just the effects of the chemo. I asked her to call my oncologist and discuss my case with him. She said she would do that, it was now Sunday morning. By this time I was figuring out that the pain medication which I can remember (Oxycodone and Norco) were really not doing the trick. The pain would come and then ease up a bit and then come back strong. I asked for something that worked and was at first told to give the O & N a chance to do their thing. I said, “Their thing “is not working. I was given morphine at least once more and the only problem is it last for an hour or two and you are back to ground zero. There was another pain medication given me but I can’t remember the name. I remembered something that they gave me in the middle of the night and it really worked, I asked for Dilaudid. Now that is great stuff. The last time I got it was the day I left, Tues. at 5 AM. So, Sunday goes by and I keep getting medication for constipation and nausea, neither of which I had anymore. I was told this is what has been prescribed by my doctor. I thought they were talking about my internist who has an office in Highland Park or my oncologist whose practice, office and staff are all at Swedish Covenant Hospital in Chicago. As it turns out, that although I had given full info about my internist and oncologist upon my entry into the ER about 7PM on Saturday night, neither of those personnel was contacted by the hospital during my 4 day stay in the hospital. With one exception: the ER did page my oncologist while I was being admitted, he called in 20 minutes after the page and was told that the page was a mistake and that it was a different Metzger and not his patient. I was told that my internist would be stopping by sometime on Monday and she never did. I was told that a representative from my oncologist would also be stopping in to see me also on Monday. That person never showed up because my oncologist does not have a traveling representative that goes around visiting hospitals! I was also told by the hospital doctor who was in-charge of my case that she had left work at my oncologist’s office but he had not returned her call. She said the same thing on Tuesday morning when she stopped by. The nurses and general staff people could not have nicer. They were very helpful and when push came to shove they had to defer to whatever the hospital’s doctor’s orders were for me. This eventually led to a small confrontation on Tuesday about noon. I then decided to check myself out of the hospital which ended up being about 4:30PM Tuesday afternoon. At this point the pain was a 1-2 which is very livable and the worst feeling was my bloated stomach which really was quite unpleasant. I went home and the short story is I didn’t start to feel close to normal until Sunday. Why did I write all of this? To warn others that hospitals are competing against each other and one of their practices is to have you treated by their staff; this leaves your local doctors out of the loop unless they are on the hospital’s staff. You must call your own doctor and not think that the hospital staff will live up to their words. This can be quite scary when you are admitted for a bad chemo reaction and you get treated for nausea and constipation. I start my second round of chemo next Monday, April 8. My oncologist has set up some procedures to lessen my reaction to the drug. More next week.

    1 Comment
  45. 45
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Pain

    Side Effects

    Update: 13 April 2013 Another “Happening” in my battle against the insidious disease of Prostate Cancer I received my first chemo treatment of Taxotere and the short story is I was admitted to the ER some 3 ½ day later. It is a long story which I have posted on a cancer site called, “What Next” and also on my FB page in order to warn others of what new changes are taking place in our healthcare system that some of us old folks are unaware of as it is not like it was when we were in our 40’s, 50’s or 60’s. This update is a warning to what can happen when someone like me forgets to take two very small pills because he has no food at the time and will wait to later and later, instead of 8Am is 9PM the same day. What could it hurt? It can hurt a lot. I had my second treatment of Taxotere some 5 days ago and now it is Friday night and I get home about 9PM from the office and see the two blue-green pills (Dexamethasone 4MG tablet) laying on the counter where I had left them that morning intending to take them after I had downed my morning cocktail of ground up fruit in my new Neutribullet blender. Well, I have to take them with food and I was already aching much more than usual, so I ate small, lite dinner and downed the pills and went to bed to watch a little TV and nod off (lately I get a total of 4-5hrs. of sleep for a total bedtime of 7 or 8 hrs.). I do nod off and wake up about 1 ½hrs. later and go to get up to relieve myself and experience pain all over my body at a 7-8 level. It takes my breath away and I fall back onto the bed. The pain came out of nowhere and I break out in a cold sweat. I try to get up again and the same thing happens, I cannot take the pain to move the bones to get out of bed. I get scared, and I just don’t get scared but I’m all alone and I can’t move without crushing pain. What the XXX is going on, when I went to bed it was only some level 2 pain in my legs and that I have gotten used to. Now the pain is coming even though I am not moving, I need to get up and think what am I going to do. I do finally make it out of bed and when I stand up straight the pain is excruciating but as it peaks and I break out into a cold sweat wondering what I am going to do, I can feel it backing down slightly to a level 7 (still not something I can live with for more than an hour or so if I can help it) I walk around and wonder if I should call 911 as I am getting light headed. I go to lie back down and when my back hits the bed I cannot take the pain, level 8-9. I am close to panic as I don’t want to pass out. I pull myself up to the edge of the bed and wonder what the XXX is going on, am I having a bad dream? No, the TV is on and one of my favorite shows, The Golden Girls is on and I cannot stand to watch it, too bright, listen to it, too loud, I must be awake because this too real of a dream. I sit on the edge of the bed and wonder if I can get through this by myself. I manage to stand up again and the pain is now dropping to a level 6 as I begin to walk around. What to do, what to do? I am getting very light headed, I go to the kitchen where I have stored an emergency box of chocolate chip cookies (I no longer eat wheat products, cookies, flour. sweets, or any kind of processed food or sugar) and open the box and stuff a couple in my mouth. It takes my mind off the pain for the moment and I convince myself that it will help with the pain, I’m really good with rationalization when need be. I walk back to the bed room and try to lie down. That is not going to happen. I stand, looking at the Golden Girls on TV and wonder why I like the show so much, right now I can stand to look at it yet I do not turn off the set, for if I do turn it off, I’m completely alone and cut-off from the outside world and that I cannot handle at the moment. Yeah, I know it may not make sense to some of you but that is how it is for me. That is why I sometimes leave a TV on and have no idea what program it is tuned into, I just need to know I am not completely alone. I try again to lay down and that still is not going to happen so I go back to the kitchen and stuff in two more chocolate chip cookies and convince myself this will help solve the problem and also as a mental diversion while I beat myself up for eating the cookies or even having them in the house in the first place. I have learned that you can only think of one thing at a time and if you can find some time that tops the pain you are home free for as long as you can hold that thought whether it be a half second or a minute, you can dodge the pain for a short space of time. I walk back to the bedroom and now am too afraid to try and lay down again do I get a great idea, I don’t want to take the heavy duty drugs in the cabinet which are perfect for this because they cause constipation and I have had enough of that in the last few weeks to last me for the rest of my life. Again, which making that judgment and thought, the pain is not there but now it is and only at a level 6, it must be the cookies working. What else can I do? I get a great idea, I’ll take my usual dose of Advil (3-200mg pills) and that will help but that stuff does not kick in till about 1 ½ hrs. later. Oh well, it is something to do and I think it will help. As long as I’m standing the pain is now about a level 5. It must be the cookies. I take the 3 Advil and head straight to the kitchen and down 2 more cookies and take two more into the bedroom with me. Now I stand there wondering if I can just lay down again and wait for the pain to go down. I slowly ease myself onto the bed and lay flat on my back and now the pain is mostly in my legs and arms but my chest and side pain are almost gone. I XXX me head up a bit and see it is an all-night marathon of the Golden Girls, they are starting to sound funny to me and the TV is not too bright anymore. I lay there and reach over and take one of the cookies I brought in with me knowing that it is the cookies that are doing the work as the Advil still has more than an hour to go. Again the guilt kicks in and when I get over it the pain is now down to a level 3-4. I watch the Golden Girls and begin to laugh, I’m now OK as long as I don’t roll over and just stay on my back. I start picking off the cookie crumbs from my chest as I eat the last cookie, I must be getting better, and I even realize there are cookie crumbs on my chest. The pain seems to be going away, I can’t follow the story line on the Golden Girls anymore, I must be drifting in and out of consciousness. I fall asleep; it is about an hour and a half since it all began. I wake up at 5:30 AM and roll over to go and relieve myself and there is a flash of fear but nothing happens. God XXX those pills do a good job. I must never forget to take care of myself and never let this happen again. Was it just a bad dream? No, still some crumbs on the sheet and the Golden Girls are still having fun. I am really glad this is over for now, I promise I will be a good boy from now on. What was used in this adventure? 2 – Dexamethasone 4MG tablets 3 – Advil soft gels 200MG each 12 – Matt’s Chocolate Chip Cookies 1 – Mind of a near crazy person

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  46. 46
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Pain

    Side Effects

    26 April 2013 Dr. Jeffrey Cilley Re: What has been happening to Michael after his third Taxotere Monday 22 April 2013 Dear Jeffrey, I am writing this down so someone will know what has been going on with me. I do not think it necessary to bother you but on the other hand I am somewhat concerned with regards to the great swings I have regarding my physical self. The infusion went well and I had a nice visit with an old friend of mine. I went back to the office and later, about 8PM I drove home. Had some veggies for dinner, retired about 11PM and took two sleeping pills which are the ones you prescribed. I fell asleep around midnight and slept for about 4 hrs. It was the longest I had slept in over three weeks. Felt pretty good the next day but noticed that I had, again become constipated. Did pay much attention to it but noticed that my energy level was somewhat less than 100%. Worked at the office all day and had all my pills, sardines, veggies, salad, etc. It was my birthday and Jennifer and another good friend took me out to dinner at Wildfire and we had a wonderful time and I had a great meal of fish and veggies and mineral water. Went home, took my nighttime pills, went to bed with the taking of two sleeping pills, it is Tuesday night at this time. Had no pain up to this point but the lack of sleep was beginning to get to me again. Only got about 2 hrs. of sleep this night and was kind of dragging when I got up at 7AM, Wednesday. Took all my morning pills but only took one of the steroid 4 mg. pills to see if I could reduce the intake and still stay pain free. Got up around 6:30AM, made myself a smoothie with all kinds of bright fruit and orange juice and eventually went to the office. Began to feel uncomfortable about the constipation but tried not to think about it. Was not very productive at the office but keep going until about 7PM I had been feeling a bit light headed all day and my head felt like I had a hangover (I no longer drink any liqueur for the last 6 weeks) and then headed for home. It is now Wednesday night and I had a healthy salad for dinner. I began to notice some pain in the bottom part of both legs and my feet. Went to bed about 9PM and took two of the sleeping pills. I got about 1 hr. of sleep and the pain in my legs was bothering me but did not take anything for it. I have not taken Advil since I started the super steroids. Spent a restless night, slept less than an hour, reading, watching TV, got up and walked around which help the leg pain for 10 or 15 minutes and then it is back. It is now Thursday morning and I’m not feeling real good and have maybe 20% of the energy I usually have. Just can’t get going, feeling really weak and somewhat confused in my head. I decided to take just one of the 4mg super steroids again instead of two. The pain in my lower legs is still there. I made a smoothie with some really bright fruit and was so tired and weak I had to go lay down again. The constipation is really bothering me. I finally get going and get to the office by 10:30AM. Feeling confused in the head, con not think straight. Get very little done. About 3PM go over to the Jewel and buy some prune juice and go home about 4PM. Feeling really lousy. Pain still in my lower legs and my energy level is below 20%. Found it hard to drive the 2 mi. back to my apartment. The walk from the church parking lot to my building usually takes 3 min. Today it took almost 5min. and I just did not have the energy to push it any faster!!!! Finally about 5 PM things start to move ever so slowly and the constipation ends about 10PM after consuming 4 glasses of prune juice. Take two sleeping pills and try to go to sleep. Another restless night with almost no sleep. Read, watch TV, walk around, sit up, lay down, the pain in my legs is still there but only a level 2-3 which I can tolerate. Still not taking any pain medication. Finally get up and make a smoothie about 7AM. Sip it until 9AM. Feeling really tired. Walking around like a 90 year old man. Go back to bed. Get up about 10:30AM and take my morning shower and am so tired I have to go back to bed. Finally get dressed and watch Dr. OZ tell me how I should not drink milk and give up dairy products. Have not had milk in 45 years. Gave up my cheese about 2 months ago. Finally, get up and over to the office about 12:30PM. Have NO energy. Took one 4mg super-steroid about 8:30AM and the pain in my lower legs slowly went down for the next 4 hours. I plan to take a second steroid later today in the hopes of avoiding the leg pains tonight. I feel like I have been on a drinking binge for the past 3 weeks. Constipation seems to be all gone. Have lost another 2+ lbs. since Monday. Have so little energy it is hard to just drive my car. Have some trouble keeping concentrating on anything. I know my change in diet is partly to cause for some of this. Also, I know that as I lose some of this belly fat the stored up toxins are getting released into my system. I have no idea how the cancer is reacting to the Taxotere and what part it is playing in my lousy feelings both physical and mental. I can deal with the physical stuff pretty well but the lack of sleep, buzzing in my head, general overall mental confusion, 80%+ lack of energy is really wearing on me. I can’t ever remember bouncing up and down like this, ever before. I am guessing I just have to wait it out and see what happens. It is 3:30PM and I’m tired and would like to go home but I can’t sleep so what is the point? I have never felt any nausea through this whole thing. .

    1 Comment
  47. 47
    • MichaelV
    • Experience with Prostate Cancer
    almost 4 years ago
    MichaelV's Avatar

    Fatigue (tiredness)

    Side Effects

    Date: 28 April 2013 To: Dr. Jeffrey Cilley Subject: Taxotere and its side effects on me Dear Dr. Jeffrey, I'm am writing this because I am not sleeping, have lost most of my energy and I'm having a hard time making it through a 12 hr. day. I had my third infusion last Monday 22 April, 2013. I seem to do find the first day and the second. On the third day I begin to loose my energy ability. By the 4th day I'm down to a very low output, on the fifth and six day and am exhausted by just walking up a flight of stairs. I recover in about 20 min. but never all the way and by the time 4PM comes around I feel like going home and lying down for a rest which I have done but not been able to sleep. At least today, Saturday, my head was not fuzzy and I could at least think straight. Even in past years when I have been sick as a dog with the flu, I have never been so low on energy. Before I started these Taxotere treatments I could get up at 7AM, be to the office by 9AM, put in a full day and leave about 7 or 8PM, go home, have some dinner and go off to sleep about 11PM, no problem. Now, I'm tired all the time. If this is what it takes to kill off cancer tumor cells, etc. then so be it but I have no idea if this is progress or I'm just wrecking my body. Yes, I'm changed my diet for the better but if that has anything to do with the loss of energy, well let's just say, I should have more energy not less. As I mentioned to you before, taking two Ambien gets me about 1 ½ hrs. of sleep, maybe. I've tried adding some sugar in the form of Popsicles but it has no effect, still no energy. Whole chicken breast, no effect, can of sardines with olive oil, no effect. I'm now never very hungry and have to remind myself to eat regularly. I have two or three cups of fresh brewed green tea, maybe one cup of fresh coffee a day. I have been fixing a smoothie every morning with orange juice, raspberry, strawberry, pineapple, blue berries, black berries, peach slices, pears, sliced apples, etc. I have never eating such a balanced diet all without any processed foods, milk or dairy products, soda of any kind, red meat, etc. Yet, instead of feeling better I'm much the worse. Is this all due to my body fighting the tumors or is it the Taxotere just distroying everything, good and bad? I surely do not know. But if this keeps up in another few infusions I will be spending most of my time flat on my back watching TV or reading, not exactly what I had in mind when I started this. My beard which has always grown fast is all but stopped. My nose is constantly drying up and cracking making clots like stuff when I blow it out because somehow, even being dry it still makes some sort of mucus. Also, when I became a runner back in the 60's I have always been warm to the touch, even after I stopped my 8-10 mi. per day some 15 years ago. For the past few weeks I have lost that heat and now I'm usually cold and have taken to wearing a hoodie at night to keep warm when I go to bed. My legs have been cool since I started the treatment. At the office, Jennifer says it is too hot and I'm putting on a sweater to keep warm. If this is what I have to endure to kill this XXX off, so be it. But if I'm just fighting a standoff, well, I really don't want to constantly struggle just to function at <20% on a daily basis. It was 5:23AM when I quite writing the above and went and took two Ambien tablets and lay-ed down in a room just starting to light up with the morning sunrise, Sunday. It was less than 15 min, when the “lights went out” and I finally entered the “dark room” which has been so hard to find these many weeks. However, the time spent in the room was somewhat short and the”light came on” at 8:31 AM just a few hours later. I feel a bit rested so I decided to come back and see what I had written and see what I can add to my understanding of what is going on with myself and my connection to reality. I have gone to the Internet and copied some effects for you and I to ponder. Would appreciate your comments on what I am experiencing as my energy output remains so low, I am somewhat limited in what I can do on a daily basis which suck a low energy output. Taxotere Side Effects: For the Consumer Applies to docetaxel: intravenous powder for injection, intravenous solution Get emergency medical help if you have any of these signs of an allergic reaction while taking docetaxel (the active ingredient contained in Taxotere) hives, red skin rash; difficult breathing; feeling like you might pass out; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have:  extreme weakness;  severe vomiting or diarrhea;  fever, chills, body aches, flu symptoms, sores in your mouth and throat;  pale skin, feeling light-headed or short of breath, rapid heart rate, trouble concentrating;  easy bruising, unusual bleeding (nose, mouth, vagina, or rectum), purple or red pinpoint spots under your skin;  upper stomach pain, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes );  swelling of your ankles or feet, rapid weight gain;  urinating less than usual or not at all;  redness or peeling of the skin on your hands and feet;  numbness, burning pain, or tingly feeling; or  redness, swelling, burning, irritation, or skin changes where the injection was given. Common side effects may include:  feeling weak or tired;  nausea, vomiting, diarrhea, constipation;  muscle pain;  altered sense of taste;  temporary hair loss ; or  fingernail or toenail changes. This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. For Healthcare Professionals ( Info for Dr. Jeff) Applies to docetaxel: intravenous powder for injection, intravenous solution Hematologic Hematologic side effects including bone marrow suppression have been the major dose-limiting toxicity. A reversible and not cumulative neutropenia has also been reported. A median of 8 days to nadir and median duration of severe neutropenia (less than 500 cells/mm3) of 7 days has been reported. A fatal gastrointestinal hemorrhage associated with thrombocytopenia has been reported in one patient. Three patients with severe liver dysfunction developed fatal gastrointestinal bleeding associated with severe drug-induced thrombocytopenia. Disseminated intravascular coagulation (DIC), often in association with sepsis or multiorgan failure, has been reported during postmarketing experience. Patients carrying the GSTP1 A/B and 3435TT genotypes may have excessive hematologic toxicity. In a summary of 37 clinical trials (n = 1,495), neutropenia (less than 2,000 cells/mm3) has been reported in 96.3% of patients with normal LFTs at baseline and 96% of patients with elevated LFTs. Neutropenia (less than 500 cells/mm3) has been reported in 76% of patients with normal LFTs at baseline and 86% of patients with elevated LFTs. Leukopenia (less than 4,000 cells/mm3) has been reported in 96.5% of patients with normal LFTs at baseline and 98.1% of patients with elevated LFTs. Leukopenia (less than 1,000 cells/mm3) has been reported in 31% of patients with normal LFTs at baseline and 44.2% of patients with elevated LFTs. Thrombocytopenia (less than 100,000 cells/mm3) has been reported in 7.5% of patients with normal LFTs at baseline and 27.3% of patients with elevated LFTs. Anemia (less than 11 g/dL) has been reported in 89.5% of patients with normal LFTs at baseline and 92.7% of patients with elevated LFTs. Anemia (less than 8 g/dL) has been reported in 8.4% of patients with normal LFTs and 30.9% of patients with elevated LFTs. Febrile neutropenia has been reported in 11.8% of patients with normal LFTs at baseline and 26.4% of patients with elevated LFTs. Hypersensitivity In one institution's experience with 623 courses of docetaxel (the active ingredient contained in Taxotere) therapy (n = 168), hypersensitivity reactions decreased from 50% to 5% once patients began receiving systemic prophylaxis including corticosteroids and antihistamines. Hypersensitivity side effects may occur within a few minutes following initiation of a docetaxel infusion. Severe hypersensitivity reactions characterized by hypotension and/or bronchospasm, or generalized rash/erythema occurred in 0.9% of patients who received the recommended dexamethasone premedication. Hypersensitivity reactions requiring discontinuation of therapy have been reported in 5 of 1260 patients who did not receive premedication. Minor events, including flushing, rash with or without pruritus, chest tightness, back pain, dyspnea, drug fever or chills have also been reported and resolved after discontinuation of the infusion and initiation of appropriate therapy. Bullous eruption including erythema multiforme, Stevens-Johnson syndrome, and toxic epidermal necrolysis have been reported rarely. Rare cases of anaphylactic shock have been reported during postmarketing experience. Very rarely, these cases resulted in a fatal outcome in patients who received premedication. General General side effects including diffuse pain, chest pain, and radiation recall phenomenon have been reported. Severe adverse events have been reported in 49% of patients treated with docetaxel (the active ingredient contained in Taxotere) 60 mg/m2 compared to 55.3% and 65.9% treated with 75 mg/m2 and 100 mg/m2 respectively. Discontinuation due to adverse events was reported in 5.3% of patients treated with 60 mg/m2 versus 6.9% and 16.5% for patients treated at 75 mg/m2 and 100 mg/m2 respectively. Deaths within 30 days of last treatment occurred at a rate of 4.0% in patients treated with 60 mg/m2 compared to 5.3% and 1.6% for patients treated at 75 mg/m2 and 100 mg/m2 respectively. Cardiovascular Cardiovascular side effects including hypotension have been reported in 3.6% of patients (3.4% required treatment). Heart failure, sinus tachycardia, atrial fibrillation, atrial flutter, dysrhythmia, unstable angina, pulmonary edema, deep vein thrombosis, ECG abnormalities, thrombophlebitis, pulmonary embolism, syncope, myocardial infarction, and hypertension have also been reported. Renal Renal side effects including severe fluid retention (generally renal in origin and generally after four to five courses of therapy) have been reported in patients using a five day dexamethasone premedication regimen. The fluid retention was characterized by one or more of the following events; poorly tolerated peripheral edema, generalized edema, pleural effusion requiring urgent drainage, dyspnea at rest, cardiac tamponade, or pronounced abdominal distention (due to ascites). Renal insufficiency has been reported during postmarketing experience with the majority of these cases associated with concomitant nephrotoxic drugs. Moderate fluid retention (17.4%), severe fluid retention (6%) and discontinuation (1.7%) have been reported among 229 patients with normal liver function using a five day dexamethasone premedication regimen. Fluid retention was completely, but sometimes slowly reversible resolving in a median of 29 weeks following discontinuation. The median cumulative dose to the onset of moderate or severe fluid retention was 705 mg/m2 (in patients receiving premedication). In a summary of 37 clinical trials (n = 1,495), fluid retention was reported in 48.5% of patients with normal LFTs at baseline and 66.7% of patients with elevated LFTs. In the same trials, severe fluid retention was reported in 5.2% of patients with normal LFTs at baseline and 33.3% of patients with elevated LFTs. Patients developing peripheral edema may be treated with standard measures including salt restriction, diuretics (e.g. spironolactone), etc. Nervous system Spontaneous reversal of symptoms occurred in a median of 9 weeks from onset. Approximately 3.8% of the 134 patients required discontinuation of therapy due to neurotoxicity. In a summary of 37 clinical trials (n = 1,495), neurosensory symptoms were reported in 53.7% of patients with normal LFTs at baseline and 41.8% of patients with elevated LFTs. In the same trials, severe neurosensory symptoms were reported in 3.9% of patients with normal LFTs at baseline and none of the patients with elevated LFTs. In a study (n = 46) of 209 cycles, peripheral neurotoxicity was reported in 30% of patients. In another study (n = 186), 11% of patients developed mild to moderate sensory neuropathy at cumulative doses ranging from 50 to 750 mg/m2 and doses of 10 to 115 mg/m2. Nervous system side effects including paresthesia, dysesthesia, and pain (7%) have been reported in one study (n = 134). Confusion and rare cases of seizures or transient loss of consciousness have been reported, sometimes appearing during the infusion of the drug. Hepatic Hepatic side effects including various increases in blood levels have been reported. In patients with normal LFTs at baseline, bilirubin values greater than the upper limit of normal (ULN) occurred in 8.9% of patients. Increases in SGOT or SGPT greater than 1.5 times the ULN, or alkaline phosphatase greater than 2.5 times the ULN were observed in 18.1% and 7.6% of patients, respectively. Increases in SGOT and/or SGPT greater than 1.5 times the ULN concomitant with alkaline phosphatase greater than 2.5 times the ULN occurred in 4.5% of patients with normal LFTs at baseline. Rare cases of hepatitis have been reported during postmarketing experience. Gastrointestinal In a summary of 37 clinical trials (n = 1,495), nausea has been reported in 40.4% of patients with normal LFTs at baseline and 40% of patients with elevated LFTs. Diarrhea has been reported in 40.4% of patients with normal LFTs at baseline and 32.7% of patients with elevated LFTs. Vomiting has been reported in 24% of patients with normal LFTs at baseline and 25.5% of patients with elevated LFTs. Severe GI reactions were reported in 8.2% of patients. Stomatitis has been reported in 42.3% of patients with normal LFTs at baseline and 47.3% of patients with elevated LFTs. Severe stomatitis has been reported in 5.3% of patients with normal LFTs at baseline and 14.5% of patients with elevated LFTs. Stomatitis appears to be dose dependent. Gastrointestinal (GI) side effects including nausea, vomiting, diarrhea, stomatitis abdominal pain, anorexia, constipation, duodenal ulcer, esophagitis, GI hemorrhage, GI perforation, ischemic colitis , colitis, intestinal obstruction, ileus, neutropenic enterocolitis, ischemic colitis, and dehydration as a consequence to GI events have been reported. Dermatologic Dermatologic side effects including reversible cutaneous reactions characterized by a rash including localized eruptions, mainly on the feet and/or hands, but also on the arms, face or thorax (and usually associated with pruritus) have been reported. Severe hand and foot syndrome has been reported. Severe nail disorders (2.6%), alopecia , and localized erythema of the extremities with edema followed by desquamation have also been reported. Very rare cases of cutaneous lupus erythematosus have been reported. Scleroderma-like changes usually preceded by peripheral lymphedema have been reported. One case of supravenous discoloration of the skin due to docetaxel (the active ingredient contained in Taxotere) treatment has been reported. Eruptions generally occurred within one week after dosage administration and were not disabling. Recovery generally occurred before the next infusion. In a summary of 37 clinical trials (n = 1,495), cutaneous adverse events have been reported in 58.5% of patients with normal LFTs at baseline and 61.8% of patients with elevated LFTs. In the same trials, severe cutaneous adverse events have been reported in 5.6% of patients with normal LFTs at baseline and 10.9% of patients with elevated LFTs. The discontinuation rate due to skin toxicity was 1.7%. Alopecia has been reported in 80% of patients with normal LFTs at baseline and 61.8% of patients with elevated LFTs. In one study (n = 46) of 209 cycles, alopecia was reported in 91% of patients. In one institution's experience with 623 courses of docetaxel therapy (n = 168), dermatologic toxicity decreased from 53% to 14% once patients began receiving systemic prophylaxis including corticosteroids and antihistamines. Severe nail disorder were characterized by hypo- or hyperpigmentation and occasionally by onycholysis (0.8%) and pain. Local Local side effects consisting of infusion site reactions have been reported. These reactions were generally mild and consisted of hyperpigmentation, inflammation, redness or dryness of the skin, phlebitis, extravasation or swelling of the vein. Rare cases of transient visual disturbances (flashes, flashing lights, scotomata) typically occurring during drug infusion and in association with hypersensitivity reactions have been reported during postmarketing experience. These were reversible upon discontinuation of the infusion. Other In a summary of 37 clinical trials (n = 1,495), asthenia has been reported in 61.5% of patients with normal LFTs at baseline and 54.5% of patients with elevated LFTs. In the same trials, severe asthenia has been reported in 11.1% of patients with normal LFTs at baseline and 23.6% of patients with elevated LFTs. In a study (n = 46) of 209 cycles, malaise was reported in 52% of patients. Other side effects have included asthenia (11.1% to 61.5%) and malaise (52%). Fatigue and weakness have been reported to have lasted a few days to several weeks and were occasionally associated with deterioration of performance status in patients with progressive disease. Rare cases of ototoxicity, hearing disorders and/or hearing loss have been reported, including cases associated with other ototoxic drugs. A case of docetaxel-induced recall dermatitis on previous laser treatment sites has also been reported. Ocular Ocular side effects including conjunctivitis and lacrimation have been reported. Canalicular and nasolacrimal duct obstruction has been a common side effect of weekly docetaxel (the active ingredient contained in Taxotere) therapy and has even been reported to occur when docetaxel is used in the neoadjuvant setting according to one study. Excessive tearing which may be attributable to lacrimal duct obstruction has also been reported. Respiratory Respiratory side effects including dyspnea, acute pulmonary edema, acute respiratory distress syndrome, and interstitial pneumonia have been reported. Pulmonary fibrosis has been rarely reported. How Taxotere Works: Cancerous tumors are characterized by cell division, which is no longer controlled as it is in normal tissue. "Normal" cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. Cancer cells no longer have the normal checks and balances in place that control and limit cell division. The process of cell division, whether normal or cancerous cells, is through the cell cycle. The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division). The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis). Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles. Chemotherapy is most effective at killing cells that are rapidly dividing. Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur. The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss. Different drugs may affect different parts of the body. Taxotere belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants. The vinca alkaloids are made from the periwinkle plant (catharanthus rosea). The taxanes are made from the bark of the Pacific Yew tree (taxus). The vinca alkaloids and taxanes are also known as antimicrotubule agents. The podophyllotoxins are derived from the May apple plant. Camptothecan analogs are derived from the Asian "Happy Tree" (Camptotheca acuminata). Podophyllotoxins and camptothecan analogs are also known as topoisomerase inhibitors. The plant alkaloids are cell-cycle specific. This means they attack the cells during various phases of division.  Vinca alkaloids: Vincristine, Vinblastine and Vinorelbine  Taxanes: Paclitaxel and Taxotere  Podophyllotoxins: Etoposide and Tenisopide  Camptothecan analogs: Irinotecan and Topotecan Antimicrotubule agents (such as Taxotere), inhibit the microtubule structures within the cell. Microtubules are part of the cell's apparatus for dividing and replicating itself. Inhibition of these structures ultimately results in cell death. the tumor to shrink. They also induce cell suicide (self-death or apoptosis). Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles. Chemotherapy is most effective at killing cells that are rapidly dividing. Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur. The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss. Different drugs may affect different parts of the body. Taxotere belongs to a class of chemotherapy drugs called plant alkaloids. Plant alkaloids are made from plants. The vinca alkaloids are made from the periwinkle plant (catharanthus rosea). The taxanes are made from the bark of the Pacific Yew tree (taxus). The vinca alkaloids and taxanes are also known as antimicrotubule agents. The podophyllotoxins are derived from the May apple plant. Camptothecan analogs are derived from the Asian "Happy Tree" (Camptotheca acuminata). Podophyllotoxins and camptothecan analogs are also known as topoisomerase inhibitors. The plant alkaloids are cell-cycle specific. This means they attack the cells during various phases of division.  Vinca alkaloids: Vincristine, Vinblastine and Vinorelbine  Taxanes: Paclitaxel and Taxotere  Podophyllotoxins: Etoposide and Tenisopide  Camptothecan analogs: Irinotecan and Topotecan Antimicrotubule agents (such as Taxotere), inhibit the microtubule structures within the cell. Microtubules are part of the cell's apparatus for dividing and replicating itself. Inhibition of these structures ultimately results in cell death.  THE BALL IS NOW IN YOUR COURT!!!!!!!!!!!!!!

    1 Comment
  48. 48
    • MichaelV
    • Experience with Prostate Cancer
    over 3 years ago
    MichaelV's Avatar

    Heart problems/heart damage

    Side Effects

    Update: 3 July 2013 A lot of time has gone by and a lot has happened to me. I have not had the energy to post has I had been in the past. I have just been too tired to do almost anything. I had two more chemo treatments. I was given some super-steroids to ward off the pain and it did the trick but it had a real bad side-effect. I did not sleep for 15 days and ended up in the ER, dazed and confused. I was admitted again (third time since 1 Mar.) and it took 5 days to get me to sleep as many of the sleeping pills just had no effect on me. I finally calmed down and went home and went from being wired to being too tired to get up and go to the bathroom. As the day wore on I got worse and worse and finally had to be re-admitted to the hospital. I was checked for everything and the found that the chemo had killed off all my bacteria but one in my intestines. I was not able to process the food I ate and had already lost 25 Lbs. I was given a very strong anti-biotic and sent home after another 6 days in the hospital. I spent the next 5 weeks trying to recover from all that happened. I got better of one week and then started to go downhill again. After 5 weeks at home barely able to do much of anything I was re-admitted to the hospital. This time I was put into to cardiac care ward as they found blood clots in both my lungs and one leg. This was getting really scary. I was sent home after a few days with a box of syringes to give myself a shot each day to stop any further clotting. It has been 4 weeks and I am now able to walk 4 to 5 blocks without having to sit down. It is a very slow comeback process. This goes down as the worst time I have ever had and it went on for 4 months!

    1 Comment
  49. 49
    • MichaelV
    • Experience with Prostate Cancer
    over 3 years ago
    MichaelV's Avatar

    Hormone therapy

    Drug or Chemo Therapy

    I have started Xtandi three days ago. I had to wait until I recovered from my Chemo + experiences which I have listed in previous postings. My PSA had gone down from 166 to 99 over a 4 month period but the three treatments damned ;near killed me. Chemo affects all of us differently and in my case i ended up in the hospital 5 times in 4 months, not a fun time. The biggest drawback to Xtandi is it's cost at $7,000+ per ;month. I have fallen into the "hole" and that means my insurance covers all but 5% which leaves me with a $383 monthly payment. When the next year starts, it will require $3000+ for the first payment until the 5% kicks in. The strange thing is that 100% of chemo was covered but since Xtandi is in pill form to payment options are completely different. I started the Xtandi because my PSA went up 16 points to 115 in a months time.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  50. 50
    • MichaelV
    • Experience with Prostate Cancer
    over 3 years ago
    MichaelV's Avatar

    Drug Therapy or Medication

    I now have been taking Xtandi for one month and one week ago decided to cut down the dosage to 1/2 of what I was taking. I develop severe hip pain on my right side which would flare up about 1/2 after I took the pills. I am talking about it going from 0 to 8 on the pain scale and it would reach its max when I would lye down. 3 - 200 mg of Advil helped but for me Advil takes about 1 hr and 15 min. to kick in and even then it would bring the pain down to about a 5. I ended up taking 2 - Narco 10mg which did the trick. In the morning the pain would slowly come back to maybe a 2-3. I did have a long discussion with my oncologist about this and considering I had to stop my Taxotere treatments after the third infusion as it almost killed me in more way than on, I said, perhaps I'm more sensitive to these drugs. The Taxotere given three times dropped my PSA from 166 to 99 in three months. I was taking the infusions every two weeks. I will be going in tomorrow for Zometa and Lupron infusions and will have my PSA checked. Last month it was 115 prior to starting the Xtandi. I still have some aches and pains but I attribute that to all I have been through and 2 Advil usually takes care of them for 24 hrs.

    0 Comments
  51. 51
    • MichaelV
    • Experience with Prostate Cancer
    over 3 years ago
    MichaelV's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    I have started acupuncture for the first time in my life. I have a lot of pain on my right side hip which comes and goes. When it comes it can reach 6-7. They wanted to MRI me again but I had it so many times I said, "Save your money and we will see what happens". Sometime the pain is gone for a week or two and then out of nowhere it returns. Very strange thing the human body.

    0 Comments
  52. 52
    • MichaelV
    • Experience with Prostate Cancer
    over 3 years ago
    MichaelV's Avatar

    Targeted therapy

    Drug or Chemo Therapy

    I have been taking Xtandi for the past three months and my PSA has gone up from 166 to 235. I am going in today to have a chat with my oncologist to see where we go from here. The rapid increase took the win out of my sales and I need some moral support. I think I have become depressed over this last potential failure. I still have problems with my sciatic nerve pain but it does not seem to be related to the cancer in my bones. At the present time all cancer seems to be contained on my skeletal structure. More when I know more.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  53. 53
    • MichaelV
    • Experience with Prostate Cancer
    over 3 years ago
    MichaelV's Avatar

    Xtandi

    Decision Point

    The Xtandi does not seem to be working for me. I am going in for full body scans again to see how far or how much the tumors have grown. One tumor is on my backside pelvic area and causing me constant pain regardless of what I do except taking pain pills. Depending on what the scans show, I will be doing radiation on that tumor to relieve the pain which is now constant unless I'm on drugs. Had a long chat with my oncologist yesterday which was very helpful. I decided to continue on my diet which eliminates almost all the fun things I used to eat and fill in the gaps with fruit and veggies, I guess I am still hoping to add months or years to my life. We also discussed a new chemo which was similar to Taxotere which almost put me in the "pine box"!!!!!!!!! So, next on my agenda are several scans next week to get a starting point on where and how large all my bone tumors are. That way we will be able to assess if some of the up coming "things" we are planning have any true effect. I know that PSA is just a number but it still bothers me when it jumps up.

    1 Comment
  54. 54
    • MichaelV
    • Experience with Prostate Cancer
    over 3 years ago
    MichaelV's Avatar

    Have to decide what type of treatment I am going to select.

    Decision Point

    Got the preliminary results of my CT scan and my boney mass tumors seem to be about the same as they were 6 months ago. I have had a lot of trouble with pain in the right hip area which has been attributed to tumors growing but perhaps that is not quite accurate. The hip pain has been going on for the past 10 months. We thought it was mostly the sciatic nerve pain as one of the scans (MRI) discovered a bulging disk between L3 and L4. For the past 8 months or so I have been living on 600mg. of Advil three times a day and sometime more. The pain got so bad I had to introduce Dilaudid 2mg into my daily drug regiment. Sometimes in order to sleep I had to go up to 4 - 2mg pills. I have also be going for acupuncture for the past 4 weeks/once a week. It is seeming to help "Time will tell". As I mentioned in another up date I have been taking Xtandi for the past 3 1/2 months but my PSA has gone from 125 to 235 during this time which is what led to the new scans being done so we could see what was going on. I will know more when I sit down next Wednesday with Dr. Jeffrey my oncologist, a wonderful man. My sleep and energy levels have been going all over the map from staying at home in bed for the day to being up and out and feeling find. It is a day to day happening.

    0 Comments
  55. 55
    • MichaelV
    • Experience with Prostate Cancer
    about 3 years ago
    MichaelV's Avatar

    External radiation

    Radiation

    I have had a growing pain in my right side hip for almost a year and thought it was first do to my shoes, then wearing my belt too tight and finally after an MRI it was determined that I had a bludging disk between L3 and L4. I took a lot of Advil and did not do any lifting and still the pain slowly got worse. I then switched to opiates to control the pain and after 3 months of being rather drugged the Doc and I decided that perhaps we should do another bone scan and check things out. I have posted those scans. If you look closely you will see the right pelvic bone tumor has grown quite a bit in 7 months and we all agreed for me to try radiation. I have now finished 95% of the required doses and the hip pain which I endured for such a long time is completely gone and I can walk and not limp without any pain. Those X-ray are some powerful stuff. I have known that since my days as a physicist but in my wildest dreams I never thought Madam Curie and I would have so much in common!

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    1 Comment
  56. 56
    • MichaelV
    • Experience with Prostate Cancer
    about 3 years ago
    MichaelV's Avatar

    Relationship issues

    Oh No

    A good friend has gone from holding his own with chemo and stomach cancer to being admitted to the hospital where they have told him there isn't much they can do for him, just like that. I can't believe it. His wife has to send the emails as he is too weak to even do that. I am so very sad.

    0 Comments
  57. 57
    • MichaelV
    • Experience with Prostate Cancer
    about 3 years ago
    MichaelV's Avatar

    External radiation (Instensity modulated)

    Radiation

    I had been having a mild to server pain in my right hip and extending down my leg, synaptic nerve pain. It was first thought that since I had a bulge between L3 and L4, that this was causing the pain. I took a lot of Advil and Tylenol and ended up on Dalotin every four hours to keep the pain at manageable level. Finally, I had another full body scan and it was thought that the tumor on my pelvic bone was what was causing the pain. I had radiation done on that area but could not have the full amount because of previous radiation on my pelvic area when my PSA came back in 2005. It really did little good but it made future radiation subject to this prior radiation. I had 12 cycles which comprised 30 sec. on top and bottom and the intensity was increased each time. By the 6th cycle the pain that I had had for more than a year, completely disappeared. It has been 6 weeks since that time and the pain is still completely gone.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  58. 58
    • MichaelV
    • Experience with Prostate Cancer
    about 3 years ago
    MichaelV's Avatar

    It has to do with pills and I am the only one in the trial!

    Clinical Trial

    I took Zytiga for about 15 months and it reduced my PSA and seemed to be doing its job. Then all of a sudden the PSA started rising sharply. Two months later we stopped the Zytiga and I started chemo with Taxotere. To find out what happened with that whole saga, go back and read my earlier journey posts about taking that chemo drug. Now that I recovered from all of that and the PSA initially went done with the Taxotere to 99, it has now risen to about 285. The two body scans, one from March 2012 and the other from November 2012 confirmed that the tumors were on the move again. So I went on Xtandi and over a three month period I saw my PSA go from 165 to 275 and it appeared that for whatever reason the Xtandi was having little or no affect on my PSA. Outside of the issue with the hip pain which I had for over a year and covered in my earlier journey posts, I have no other cancer related pain. Therefore, it was decided by a commmity of three, me, my best friend and Jeffrey, my oncologist that I would not go back on Taxotere as I just did not have the energy to face it at this time. It took way too much out of me and I needed some quality time before I tried that son of a XXXXX again. So, I had two bottles of Zytiga which my sister had bought for me at a cost of $1150 each sitting on the shelf and doing nothing. I am now my own clinical trial taking Zytiga in the morning with 5 mg. of prednisone and Xtandi late in the day, then following up with 5 mg. of prednisone‎ at night before bed. So far I seem to have no side effects. For the first time in many months(10) I am able to really fall asleep with out any sleep aids, wow, whoever thought that could happen. I will keep you updated as new things arise.

    0 Comments