• Harry's Avatar

    Harry posted an update

    The March 2013 issue of Consumer Reports just arrived. The cover article is "Save Your Life 3 cancer tests you need plus 8 you don't." The article is fairly long and is interesting reading. The 3 tests they recommend are for cervical cancer, colon cancer, and breast cancer. The 8 they say to avoid (unless you are in a high-risk group) are bladder cancer, lung cancer, skin cancer, oral cancer, prostate cancer, ovarian cancer, pancreatic cancer, and testicular cancer. Their reasons for recommending against those tests vary from test to test.

    I'm posting this here because I think there might be some interest. I suspect that many WhatNexters will object to their conclusions.

    2 Comments
    • Carol-Charlie's Avatar
      Carol-Charlie

      Soooooooooooooooo... Why do I feel angry about this? As a Stage IV Ovarian Cancer survivor...I'm more than angry. Its symptoms are small, hardly noticable.. It's deadly... and it's only lately that treatments are really smashing it. Did anyone res[pmsob;e evem talk to a gynecologic oncology surgeon? Sorry Harry I'm yelling at the choir. Thanks for posting this.

      almost 6 years ago
    • SouthernMom's Avatar
      SouthernMom

      I am glad you posted this, too, but, wow. Just wow. I find it irresponsible of them to publish medical recommendations to people when that is the decision of the physician based on the individual case. I will say it again. Wow.

      almost 6 years ago
  • Harry's Avatar

    Harry posted an update

    "Once I thought it delightful and astonishing to find a present so big that it only went halfway into the stocking. Now I am delighted to find a present so big that it takes two stockings to hold it, and then leaves a great deal outside; it is the large and preposterous present of myself, as to the origin of which I can offer no suggestion except that Santa Claus gave it to me in a fit of peculiarly fantastic goodwill." G.K. Chesterton

    4 Comments
    • Harry's Avatar
      Harry

      Well, it was Chesterton's joke and he was pretty stout. I just came across the quote and thought it appropriate.

      Love is all-important. And, true love doesn't care about weight or hair. I'm glad Tom loves you just the way you are. :-)

      almost 6 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      Harry - I just figured out my humor is considered 'dry' I think.... I was laughing at your post and just kind of smarted off back... I truly wanted you to laugh... ((Hugs))

      almost 6 years ago
    • Harry's Avatar
      Harry

      Carol, that's the problem with the Internet. We don't see each other's faces and body language. I'd have known your were laughing. :-)

      almost 6 years ago
  • Harry's Avatar

    Harry posted an update

    Merry Christmas to us all; God bless us, every one.

    I realize that not every WhatNester celebrates Christmas, but Peace and Joy are universal.

    I wish:

    That everyone can celebrate a victory over cancer, whether a big victory or a small one, in the coming year.

    That everyone receives the strength necessary to endure and cope with all trials and tribulations that the new year brings.

    That everyone finds happiness.

    Harry

    5 Comments
    • Carol-Charlie's Avatar
      Carol-Charlie

      So true so true.. Thanks Harry... AND to everyone... May your blessings be magnified and your troubles be halved in 2013

      almost 6 years ago
    • NanaL's Avatar
      NanaL

      Hope you had a great Christmas Harry! I sure enjoyed family and spending time with my 2 yr old granddaughter. I had chemo yesterday and I'm sitting here with my friend the 5 FU pump. I will get disconnected tomorrow afternoon and that is always something to look forward to. I hope and pray everyone has a healthier and renewed sense of spirit for the New Year! What a blessing it would be to finally find a cure for this horrible disease that effects so many!! Blessings to all!!

      almost 6 years ago
    • Harry's Avatar
      Harry

      Christmas was great. Saw my Mom and a couple of brothers and their families.

      almost 6 years ago
  • Harry's Avatar

    Harry posted an update

    Wish me luck. Today's the day for rituxan.

    12 Comments
    • Harry's Avatar
      Harry

      And I did get to go home. About 8 PM the allergist came by, saw that I was doing very well, and got me released.

      almost 6 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Harry, I'm glad they sprung you!

      almost 6 years ago
    • Harry's Avatar
      Harry

      Thanks everyone for your good wishes. Things went well, aside from the bureaucratic snafus.

      almost 6 years ago
  • Harry's Avatar

    Harry posted an update

    What do you know?. I have a cheek bone on my left side again. :-) I haven't felt it for the longest time. :-)

    4 Comments
    • Harry's Avatar
      Harry

      Yeah, I had some wierd, almost psychodelic, effects during the initial bendamustine injection. The second day had nothing of the same effect and I never had any sort of that reaction back in 2011. It also felt like I could continue to feel bits of tumor melt away in the evening when I sat still. I think the bendamustine went like gangbusters on the tumor and the resultant debris may have had some wierd effects on my consciousness. The tumor was in my cheek after all. Of course, this is all subjective and may result from my wanting results. But the dramatic shrinking in size of my tumor is real.

      Rituxan has very long term effects. Yeah, bendamustine caused a dramatic improvement, but rituxan will seal the deal--I hope.

      Side effects, aside from the light show during initial injection and mild lightheadedness yesterday have been virtually non-existent.

      almost 6 years ago
    • Peroll's Avatar
      Peroll

      Harry, I think that you really got inti a fight and got hit in the jaw. You should be telling us how bad the other guy looks, or maybe you did tell that to the hospital adminestrators????? I wish I could find a chemo regimine that works like that for colon cancer.

      almost 6 years ago
    • Harry's Avatar
      Harry

      Peroll, Not too much actual bloodshed, since I did all the damage over the phone. I am astonished--and, of course, pleased--by how fast the tumor reacted to bendamustine. It isn't gone. I can still feel it in there. But, it is no longer the painful presence it was. I suspect the effect is temporary at this time. That's one of the reasons I still want the rituxan. And this isn't the final round.

      Still, wow, I'm blown away by the results. I'll take and celebrate the victories I can get. I hope everyone else here has victories they can celebrate.

      almost 6 years ago
  • Harry's Avatar

    Harry posted an update

    And, back to work. It looks like next week for the rituxan. I'm causing major problems at the Henry Ford, but it sounds like they will get their act together eventually.

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      Well Harry, they will get it going for you I'm sure. They are probably wanting to cover their butt to be sure you don't throw a full Conners law suit out there.

      I think you have their attention.

      I thought of a Job opportunity for you Harry, You can rent yourself out to go to the places that are giving our WhatNexters a problem, you can be the "Heat" you know, black gloves, dark glasses, and always start with "I understand that Yooos have a problem with my friend"? Man I can see it now, movie deals and everything!

      Keep plugging my friend.

      Greg P

      about 6 years ago
    • Harry's Avatar
      Harry

      Hi Greg, Well, it certainly is the season for CYA at the Henry Ford. All of it in my best interests, of course. But, if that is the case, why did I hear about legal dept. involvement. :-) My brother, the lawyer, agrees. We were laughing about this last night. If Wednesday hadn't gone so well he might have gotten a "Help" call from me. Of course, he doesn't do that kind of law (he never does the useful stuff), but he did say that, if I had needed it, he could have got me a high powered malpractice friend. I didn't really want a law suit, I just wanted to rearrange priorities.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    Back in the infusion room for the second round of bendamustine. They still have not figured out the rituxan. I am really glad I didn't wait. Things are going very well. The swelling appears to be reduced and others note the same thing. It is no longer swelling and pushing. My jaw is no longer being painfully distorted and I could eat with relative comfort.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Hey that's great Harry. Glad to hear its going good so far.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    After Action Report. :-)

    No casualties, that I know of. From what I was told it appears that the various department heads etc. were having a debate early this morning, starting before 8AM, as to what they would do. My oncologist, a very tall, large, impressive guy with a deep booming voice was throwing a major (but very professional) temper tantrum to the effect that they needed to treat me NOW! At 8:00:01 AM I called the executive suite, discovered that the hospital CEO really wasn't available and so demanded the highest level executive available. I got the VP in charge of Nursing. I did a Full Connors on her. That's sort of an extremely tightly controlled temper tantrum of my own in which I explained exactly why I was angry and what I expected done ("you can treat me in the infusion room, you can treat me in the ICU, you can treat me in the Oncology Department, you can treat me in the parking lot, BUT TREAT ME THIS MORNING!"). Apparently, without either of us knowing it, my oncologist and I were in perfect sync. About 5 minutes after I hung up so that the VP could make some calls I got a call from the oncologist telling me that they were ready for me in the infusion room now. The VP called quickly on his heels to tell me the same thing.

    The decision, to change the order of the therapy so that I got the bendamustine first and the rituxan after, is reasonable. It doesn't mean that they have the rituxan problem resolved. There are real concerns there--I've never questioned that. But, now they have time and I am getting treatment.

    All-in-all I am pleased with how things went. Yes, I had to resort to the verbal equivalent of a bunker-busting smart bomb, but I got their attention and made everyone realize that I had legitimate concerns that must be addressed. And, I'm pleased with the treatment results. It really does feel like the tumor is shrinking. Not much thus far, but it isn't pressing and straining as much as it did. I haven't had an episode of painful growth since the treatment began. I was able to eat tonight without my jaw becoming fatigued. And my tongue is having less trouble. Maybe some of what I feel is subjective wishful thinking, but I think some is real.

    Declare victory, strike up the bands, and march the troops out with flying colors.

    6 Comments
    • GregP_WN's Avatar
      GregP_WN

      good job Harry, sometimes we have to stand up for what we think is right or what we want. dr's don't know EVERYTHING!

      about 6 years ago
    • Peroll's Avatar
      Peroll

      Harry,y comment was thining that you were withdrawing the cancer fighting tropops not the adminestrating fight troops. My bad!

      about 6 years ago
    • Harry's Avatar
      Harry

      Carol, you are an inspiration. You got the idea. If you won't fight for yourself, who will?

      Greg, yeah, doctors don't know everything. Sometimes I think they few patients as cases, not people. I hope some of them learned that I am a real person and I can make waves.

      And, Peroll, I like having you at my back. My brothers want to join. They're my size, but there are a lot of them. And they all know how to make waves.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    It looks like they finally figured out the problems with breakfast. Instead of a "hot" individual breakfast delivered lukewarm after 10, they just brought in a spread of fruit, yogurt, cereal, bagels, etc. before 9. The coffee is still lukewarm.

    3 Comments
    • Peroll's Avatar
      Peroll

      When I had radiation a year ago, always first thing in the morning, I kept asking them to redirect the beam to heat the breakfast burrito in my pocket. They never would do that! At least they managed to get you in without anybody getting hurt. Let us know how it went.

      about 6 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      Oh Harry ... After my debulking surgery.... and for over a week.... I ate the worst food ever. A cheese omlet looked like and tasted likie.. a microwaved scrambled egg (unstirred) and some cheez Wiz glomped on top. You're doing great and we're all cheering you on. You are right... mix the sweet and gentle man with the Senior Senator and then sneak in a commanding general....

      about 6 years ago
    • Harry's Avatar
      Harry

      Carol-Charlie, I'm thrilled when the worst thing is lukewarm food. And isn't it great that I can complain about that. :-)

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    Rejoice! glory is ours!

    Everything fell into place with one, rather impassioned, phone call to the executive offices. They switched the order of the drugs around so that I could get the bendamustine first. No problems there and now they can spend time figuring out the rituxan.

    Gee, I barely got into Full Connors Mode. :-)

  • Harry's Avatar

    Harry posted an update

    I can't believe this! Greg, even if last week wasn't a cause for foul language, this really is. But, I won't. :-)

    At dinner time tonight the hospital called with the news that their legal department doesn't want me treated in the infusion room. They want me in the ICU. But the ICU doesn't want me there. They have no idea what they are going to do but I should wait patiently until they decide. I can feel and see this thing growing in my cheek and they want me to wait?!

    What I am thinking of right now is calling the CEO of the hospital in the morning and telling her that she has one hour to clear all the objections and call me back to tell me to come down immediately or I WILL call a malpractice attorney. If they don't treat me immediately then I will sue them for any permanent disfigurement even if I don't die as a result. If I get treated at another hospital then it is her hospital that gets sued for throwing up this last minute delay. The only way she can avoid a lawsuit is to call me within the hour to tell me that they will treat immediately.

    I probably will think better of this in the morning. But now I am so furious.

    9 Comments
    • Peroll's Avatar
      Peroll

      Harry, I got you beat at 6' 5" and 230# with quite broad shoulders. Before cancer I was normally 250 and I still have my beard so I am slightly hairy.

      about 6 years ago
    • Harry's Avatar
      Harry

      You got me beat, but not my oncologist. He's also about 6' 5" and probably outweighs you. He's bigger around than he was when he played basketball against John Wooden's UCLA. His hair is thinning and he doesn't have a beard. And, he was throwing an almighty temper tantrum of his own with the department head, etc. when I blew the doors off the executive suite. They didn't have a chance.

      Illegitimi non carborundum!

      about 6 years ago
    • Peroll's Avatar
      Peroll

      Harry, Sounds like you survived the first chemo today thanks for letting us know and get some rest.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    Hey, tumor, you listening. You got 24 hours to hit the road. This town ain't big enough for both of us!

  • Harry's Avatar

    Harry posted an update

    Never thought I'd look forward to chemo. Now, as the tumor sits on my cheek and presses into my jaw I think, "only two more days and I've got you sucker." :-)

  • Harry's Avatar

    Harry posted an update

    Yesterday was interesting. It was Saturday and I had scheduled a visit to the dermatologist in the morning. I don't think I've mentioned this before, but a lifetime of sunburns has resulted in several carcinomas (the very benign sort of skin cancer) on my neck, back, chest, and shoulders. The dermatologist has been testing and scraping a few at a time every several weeks for a couple of years now. We have been on the lookout for anything worse, but so far, so good. I last saw him before the dental problems and my swelling cheek started up. There were some odd spots on my chest so he took biopsies. I haven't heard anything from his office which is unusual because they seem quick to call and tell me that it's another carcinoma. When I saw him I asked about the biopsies. It seems that he examined them under his microscope and didn't see carcinoma or melanoma. What he thought he saw was lymphoma. So he sent it to a lab and hasn't heard back since.

    There are several reactions to this--some of which can't be said on this forum. :-) On the one hand, this is out of his area of specialty and I can see that he wouldn't want to go off half-cocked. On the other hand, any mention of lymphoma to me in any context would have me calling my oncologist immediately. Maybe we might have caught this a bit earlier. Maybe not. And it probably makes no difference in the long run.

    I did call the oncologist immediately, but he wasn't there. Not surprizing on a Saturday morning so I left a message with his answering service to the effect that I had new information and could he call me but it was not an emergency. When I got home I sent a more detailed email. Then, I went to the hospital to ge the CT scan that the oncologist had ordered earlier in the week. About 2:30 PM I left the CT scan and headed for the exit. Suddenly, who should come around a corner but my oncologist! I suspect he'd been there much of the morning (on a Saturday!) and still had people to see. When I called to him and asked about my phone call and email he took a few minutes to get my info and take a quick look at the spots on my chest.

    2 Comments
    • Peroll's Avatar
      Peroll

      Harry, you left us hanging. Whyat did the oncologist say? We are all hoping it was good news!!!!!!

      about 6 years ago
    • Harry's Avatar
      Harry

      Didn't mean to leave you hanging. :-) I had five minutes with him in the hospital hall and then in an empty room. Most of it was telling him my news plus show and tell with the spots on my chest. It really wasn't a change. All he really told me was that he was writing the chemo orders today and that the prognosis stats on the web were out of date--of course.

      I like him for a lot of reasons--including that he always has time even if he is busy. And that he really does spend a lot of time with patients. It was, after all, a Saturday afternoon that I found him in the hospital and he clearly still had patients to see. When I was admitted in April, 2011 after my massive reaction to rituxan, he showed up in my hospital room at about 8 PM. He takes his calling seriously.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    Saw the oncologist, again, today. We are all set for chemo next Wednesday through Friday. It will be Rituxan and Bendamustine again. The big difference is that I will spend all day Wednesday getting desensitized to Rituxan. This is going to be so much fun. At least the two drugs are easy on patients (aside from the massive allergic response to Rituxan I had last time).

    I saw Nurse Kelly, the one who saved me last time. Everyone should know a Nurse Kelly. :-) Anyway, she was so sure she remembered which drug I reacted to that she said she'd buy me lunch if she was wrong. Now, she owes me a lunch. Of course, lunches in the Chemo room are free.

    5 Comments
    • Modern's Avatar
      Modern

      Your guys treatment places gave ya lunch all we get are pretzels though admittedly those pretzels have stopped a few negative reseitations lol

      about 6 years ago
    • Harry's Avatar
      Harry

      Hi Modern, Glad to see you around. Yeah, "free" (lukewarm) breakfast at about 10:30AM and a "free" lunch sometime in the afternoon. Stick with the salads. And, someone always pays.

      about 6 years ago
    • Peroll's Avatar
      Peroll

      Harry is right hospital lunch is alot like school lunch, not much to loow forward to. Second prize may be two lunches. If you can have a friend bring you a pizza!! You get extra points if they bring some for the nurses.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    No good deed goes unpunished. :-)

    Several weeks ago I posted a comment about a study at Mass General, one of the top cancer centers in the US, on hypersensitivity to Rituxan. The information I had was very limited but I followed up on it and was able to talk to one of the researchers. The conversation indicated that their study offered real hope for people like me who have really bad reactions to Rituxan. Of course, I didn't just post the info here, I made sure my oncologist was informed including the name and contact info at Mass General.

    Suddenly, my WM has returned and it looks like a repeat of chemo is in store. My oncologist made a point of telling me about their brand new protocol for treating hypersensitivity to Rituxan which they got from Mass General courtesy of my prodding.

    If I can make a general point about this. No one is more concerned about your cancer than you are. You owe it to yourself to become as informed as you can about your cancer. If you come across anything that might help (I am NOT talking about quackery here), then share it with your oncologist. If he is good, he will appreciate the heads up. He can't read everything and your focus is probably a lot tighter than his. Reading medical journals is not for everyone--and not for me. I found the information about the Mass General study in a quarterly newsletter for WM patients. There are websites out there for just about every variety of cancer. There is some misinformation and quite a bit of quackery, but you'll learn to recognize it.

    Study! Learn!
    Fight! Live!

  • Harry's Avatar

    Harry posted an update

    Oh, well. I saw my oncologist today. He was able to get me in this afternoon. What I've got is exactly what I've had. It's WM, but as lymphoplasmacytic lymphoma. The doc said that was why they changed the name officially. WM was described as a blood disease but sometimes it forms these tumors.

    So, it's still the old indolent WM. But, now I have a symptom on my jaw so I get treated. Radiation and maybe chemo this time. Oh Joy, oh rapture. :-) I'll keep you updated.

    8 Comments
    • SpunkyS's Avatar
      SpunkyS

      If you run out of oomph to fight, I will give you some. :)

      about 6 years ago
    • Harry's Avatar
      Harry

      Greensmythe, thanks for the kind words. I really didn't do anything many of the others wouldn't have done. I just affirmed your right to be treated as a person, not a diagnosis, and insisted that a second opinion was in order. You're the one who fixed that up. You were coming off a very bad week. Eventually you'd have figured that all out when you had a chance to recover form the shock. But, I am glad to have been the friend in need.

      Ticklingcancer, there's a choice in the matter? When you are fighting for your life you'd better be serious. :-)

      SpunkyS, I'm sure you've got plenty to spare. If I need some I'll be sure to ask. :-)

      I really value the community here. You all understand what it is to go through this. We may not have wanted to be here, but this is the way it is. When life deals you lemons, make lemonaide.

      Fight! Live!

      about 6 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      We'll all be sending our good wishes to help you in this fight.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    $%^*&^% and #$%(*&^ and %%%%%%!

    We use cuss words far too frequently in these latter days. They should be carefully hoarded for use on special occassions. And this is one of those occassions!

    *&^% the $$$%%^&!!!

    Unfortunately, the nanny program won't let me express myself properly. I know why and I support the concept, but there are times... :-)

    So, my dental problem isn't a dental problem. Yes, there's an abcessed tooth in the middle of the swollen jaw, but it isn't cause and effect. The oral surgeon gave me the lab results a couple of hours ago. It's a *&^%#! B-cell lymphoma! How many of those things is one poor soul supposed to get! That's what WM is. No wonder the antibiotics have had no effect on this.

    I did get a brief chance to talk to my oncologist. I've sent him the pathology report and will see him Wednesday morning. Until then, who knows? I had hoped that it would be a few years before I had to deal with this again. Now, it looks like I'll be getting treatment sooner rather than later. It's far too soon to know if this is WM or something else. I didn't think WM was supposed to cause large lumps.

    In the meantime I need to kick something. :-)

    6 Comments
    • Peroll's Avatar
      Peroll

      Harry, sorry to hear your news. I agree that this is a time cussing is appropriate though I probably cuss too much myself. We are praying for you and that you will find out that this is only a minor set back. Go hug one of your dogs and get some comfort. Good luck!!!!

      about 6 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      Keep your chin up buddy. We all know you have exactly what it takes to beat this back into remission. Sending prayers your way.

      about 6 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I'm so sorry life pulled a trick on you. That stinks. I have some coworkers I can lend you if you still need something to kick... I hope things go well for you at your appt on Wednesday. All the best.

      about 6 years ago
  • Harry's Avatar

    Harry posted an update

    I hope this works. :-)

    One of my favorite on-line comics is xkcd. It's jokes involve science, math, and literature. Today's cartoon is for everyone here:

    http://imgs.xkcd.com/comics/two_years.png

  • Harry's Avatar

    Harry posted an update

    Good news!--sort of. :-)

    As many know, Rituxan is one of the key drugs in treating B cell lymphomas. But, when I was treated with it, the third treatment was a disaster. I went into anaphylactic shock when the drug first entered my system. I haven't taken that again. Luckily for me, Rituxan and bendamustine had already knocked back my WM to the point where I don't need treatment for now, and, maybe, for a few years. There are some alternatives on the horizon but, until they are available, it would be nice to have the option to get treated again with one of the more important drugs.

    An abstract was published last May by several doctors at Mass General in Boston about hypersensitivity reactions to Rituxan. The abstract concluded with a note that they had had 100% success in de-sensitizing patients. It's just an abstract for an, as yet, unpublished paper. I sent a letter to Mass General last week asking for information on the severity of "hypersensitivity" they encountered and about their de-sensitizing efforts. I received a call from one of the doctors yesterday. He told me that their study had included patients with reactions as severe as mine and that they did successfully de-sensitize even them.

    So, now, if I need it, there is a new option. I can get Rituxan. Hoping for new drugs is nice, but knowing that a proven drugs is available is also nice. :-)

    This is also good news for anyone else whose reaction to Rituxan was over the top.