• FreeBird's Avatar

    FreeBird posted an update

    Pancreatic cancer & medicine: Where is the progress?

    In 2012, after we both felt he won his battle with his first big cancer-- lung cancer-- I sat with dad in a little room and listened to the doctor give the diagnosis-- stage 4 pancreatic cancer, with a prognosis of months to live even with treatment. By 2013, I watched my dad take his last breaths in this world. During that year, I asked questions and searched for answers, where there were almost none to be found. It was tough to see not only my dad struggle, but people on this website who also want answers that nobody seems to have.

    The National Cancer Institute reports that most pancreatic cancer is stage 4 by the time it is diagnosed, and that stage 4 has a five-year relative survival of 2.3%. http://seer.cancer.gov/statfacts/html/pancreas.html I've seen it described as "the deadliest cancer." Estimated new cases in 2014 equal 46,420, and deaths equal 39,590. The U.S. deaths in 1975 were 10.7 per 100,000 people. In 1990, the U.S. deaths were 10.7 per 100,000 people. In 2010, the deaths were 11.0 per 100,000 people.

    In 1975, there were 11.8 new cases per 100,000 people, and in 2010, there were 12.3 new cases per 100,000 people.

    For decades, the chemo drug of choice was 5-FU (fluorouracil). In the late 90's, Gemzar (gemcitabine) came along, mostly making a difference of months if you're lucky. Several years ago, based on a clinical trial out of France, the combination FOLFIRINOX (FOLinic acid, Fluorouracil, IRINotecan, and OXaliplatin) came along as a first line option for people who could tolerate its toxicity. Again the difference is usually measured in months. Another option came into use last year-- Gemzar combined with nab-paclitaxel or Abraxane. I remember how excited everyone was hearing about this when it was announced in the company, and how interesting it was to see how it was described in the investment pages. When you look at it compared to the results from the other drugs, it makes you wonder what the fuss was about. There's not much change in the prognosis after all these years.

    Each weekly visit to the oncologist was $250. to see the oncologist for a few minutes, not counting everything else. From his first cancer, I remember the cost of one of the medications just to deal with the side effects-- it doesn't have anything to do with the cancer. It was to raise the white blood cell count at that time, Neulasta, and it was over $8,000. per shot. We sat in the doctors offices and watched drug reps come in pushing their brands. Dad usually ended up feeling worse with the treatment for this cancer than he did without it, with little to show for it. He would go in, have his blood tested, see the doctor, and then go to the chemo room, where there were rows of chairs and IV pumps-- over two dozen of them. I couldn't help but have a flash in my mind of cow milking stalls, and to think what an incredible money maker this business is. In fact, when we first went in, we went into a little finance office and I felt like we were at a car dealership. I wondered how people must feel when they do not have any resources to pay, when they stepped into that room, or maybe they decided not to go at all. When we left, we made a game of driving around the parking lot to look at the doctors' cars and joked that there's another payment on the Lexus and Mercedes.

    Fastforward to hospice care, where nurses expressed their disappointment that they saw a lot of older people at the end of their lives, with terminal cancers, in extremely poor condition, who still had treatments pushed by their doctors for reasons they felt were only because they had the financial resources to pay the bill. There are two sides to medicine-- the dirty business, and on the other hand people who are extraordinary, smart, caring, who make a big difference. One such person was my dad's thoracic surgeon for his first lung cancer-- an outstanding and smart doctor as much as he was compassionate and caring. But the other side of the business is depressing. When you look at the amount of money they're making, and they way they talk about their drugs on financial websites, it seems there's a bigger financial incentive to keep the disease around than to get rid of it.

    4 Comments
    • Rick1970's Avatar
      Rick1970

      Bravo!

      over 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      I know what you mean Freebird. I was in the same position with my Father as you, only a different cancer. In our case they told him that his prostate cancer would never kill him, something else would. Boy were they wrong!

      over 6 years ago
    • AmyJo's Avatar
      AmyJo

      Well said.

      over 6 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Whew. Very emotional holidays with family.

    2 Comments
    • country's Avatar
      country

      My heart is with you freebird, that we all should be so lucky to have a daughter care for us as you did your dad! God bless you for all you did
      Country

      over 7 years ago
    • GregP_WN's Avatar
      GregP_WN

      I know that feeling all too well! Only time will help, but still today I either say something or see something that brings Mom and Dad back to me, so you will never lose them, just be easier to get along without them. Wish you the best my friend!

      over 7 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    I miss and love you dad.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      I feel your pain brother, it's been 3 years and still everyday I can think of something that makes me think of either mom or dad. I hope I never lose that.

      almost 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Bird has been safely returned home.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Is that like "The eagle, has landed"?

      almost 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    We are part of something bigger than the cells of our bodies, or anything that can happen to us during our short lives. There is a great eternal mystery that underlies our brief visit. As a caregiver, I found this website a little over a year ago, and with the thoughts going through my mind at that time, I chose the name FreeBird. I posted a video of that song in the pinboard as soon as the pinboard was available. Then when my dad died, I posted another video with the song Freebird. Shortly after my dad died, a beautiful bird started following me around, and would not leave me alone. That's the first time that has ever happened to me. If I went into the home, he came to the window looking for me. If I opened the door, he showed up and walked up the walkway, right up to my feet. Day after day he did this. Finally, I took the bird in and started to care for it in case he or she is ill or injured, and will attempt a release after a recovery period. The skeptic can call it a coincidence But it has brought me comfort, and I hope that sharing that has brought you comfort too. I'm now a caregiver for a bird.

    6 Comments
    • Memmie's Avatar
      Memmie

      that is truly wonderful and by no means a coinkidink -- haha - you will be a wonderful caregiver to your little friend - god works in mysterious ways !! Hugs

      almost 8 years ago
    • Blue's Avatar
      Blue

      Your story about the bird is significant, I think, and definitely encouraging. Thank you for sharing it.

      almost 8 years ago
    • FreeBird's Avatar
      FreeBird

      I tracked the bird back to its loft using the leg band. The loft is located near the Hospice building where I drove dad to check it out when we were trying to choose which Hospice to use-- two towns away.

      almost 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Thank you for your thoughts and prayers. I miss my dad and friend very much.

  • FreeBird's Avatar

    FreeBird posted an update

    Dad died this morning, while I was holding his hand.

    7 Comments
    • geekling's Avatar
      geekling

      Very sorry for your loss. I hope you can take your memories and experience lessons forward to bring you comfort and renewed hope.

      about 8 years ago
    • Topazcat's Avatar
      Topazcat

      My heart goes out to you. I have been praying for both of you. You have been incredibly brave and caring.

      about 8 years ago
    • Lucia's Avatar
      Lucia

      I haven't been in here for a while almost the 10 months, too hard but I came to read your feed. haha. My mom passed away June 25, 2013. It hasn't been easy but like you I am very thankful to have shared this journey with her & to have her pass in our home as she desired. I see you are still encouraging others & the world needs more people like you!

      about 7 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    There has been a significant downward turn in my dad's condition, and we are nearing the final part of his illness. Heavy hearts.

    5 Comments
    • Joachima's Avatar
      Joachima

      So sorry, FreeBird ... praying for all of you.

      about 8 years ago
    • Ladykarla's Avatar
      Ladykarla

      My prayers are with you.

      about 8 years ago
    • natte's Avatar
      natte

      Praying for you and your father during this difficult time.You are truly his anchor.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    This past week, there has been a loss of mobility. Hospice has provided a hospital bed to make it easier to help dad get comfortable and to move him around. We had to shop for sheets to fit it. So that might be something to consider asking about if you're preparing for this situation. I never thought about it before.

    I mentioned that I used Craig's List last year as a resource to find a wheelchair when dad had a mobility problem then. It has come in handy. Hospice here does have this resource available as well.

    We have switched to liquid morphine to handle breakthrough pain. I am told it works faster, but does not last as long. I can give it to dad every two hours, and notify them if he experiences any additional pain. It seems to work very well. He has lost about 20 pounds in the last two weeks.

    Today, he's doing surprisingly well. The ABHR gel for nausea works great except for the morning when he first takes his pills for the day. He seems comfortable, and in little pain with the medication.

    3 Comments
    • Ladykarla's Avatar
      Ladykarla

      Thanks for the update. I am praying for you.

      about 8 years ago
    • GregP_WN's Avatar
      GregP_WN

      My experience with the liquid morphine was that also. I gave it to both mom and dad, in increasingly frequent and stronger doses as time went on. They will tell you when to up the dose and when to get more frequent.

      Hospice people are great for this situation, I was glad to have them.

      about 8 years ago
    • music's Avatar
      music

      It is good to know that your Dad is doing well today and that pain medication is working.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Dad's journey with cancer is closer to the end than the beginning. But cancer has lost, and it always will. Love has won.

    3 Comments
    • Lirasgirl33's Avatar
      Lirasgirl33

      Love has definitely won Freebird. I read someone write, "They didn't lose their battle with cancer, they just reached the end of their journey". As we all here on earth will at some point. You and your dad have touched my life in so many ways. Your love for your father and the compassion you have shown him and to all of us here on Whatnext is beyond any word could describe. Thank you for sharing with all of us. Sending love and hugs to your dad, you and your family. <3

      about 8 years ago
    • GregP_WN's Avatar
      GregP_WN

      Now that is touching. Kind of got me. Thanks

      about 8 years ago
    • music's Avatar
      music

      As you said, it is all about love. You are a great human being. All my best to you and your Dad.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Another difficult day. Lung issues, and congestion. Dad always surprises me with bouncing back from tough times, so I don't know what to think anymore. Sometimes it looks as though it's close to the end, according to the books. Then we get a surprise. The past week or two, though has been tougher than usual. One thing we can never say is that he didn't get enough medicine. They have thrown just about everything at whatever problems come up. Sometimes it's difficult to manage them all even with a pill box. Staying well organized helps. There's medication six times a day, medication as needed when symptoms arise, and a nebulizer.

    2 Comments
    • gwendolyn's Avatar
      gwendolyn

      I hope your father is as comfortable as possible and both of you are at peace. He's lucky he has someone like you for never ending support (and to keep all the Rx straight!)

      about 8 years ago
    • GregP_WN's Avatar
      GregP_WN

      I know what you mean about the meds Freebird. I had the pill box and then just a "box" that was full of the just in case meds. I was a little pharmacist by the time we were done. I learned what box was what by it's color and shape and was able to grab them in a flash.

      Hope you continue to get good results with your medication routine.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Busy and difficult day today. Nausea and vomiting. Feeling of fullness. Still swelling in the legs, ankles, and belly.... Shivers, myoclonic jerks, hiccups, fever, falling asleep a lot, and becoming more difficult for him to swallow pills.

    4 Comments
    • music's Avatar
      music

      hoping for better days for you and your Dad

      about 8 years ago
    • ElaineW's Avatar
      ElaineW

      Praying for you and your Dad

      about 8 years ago
    • GregP_WN's Avatar
      GregP_WN

      Sorry your getting into another stage Freebird. It get's worse but then gets easier. I wish you and Dad an easy transition.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Constant diarrhea from the medication for hepatic encephalopathy. Dreaming, and some hallucination. Right now, he's having a terrible time.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      sorry for those conditions Freebird. I remember Dad being in a diarrhea stage, that's no fun. Keep up the good work, your a fathers pride.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Food tip: The Carnation Breakfast Essentials powder mixed with double milk also works well when used as the liquid for instant pudding mixes.

    1 Comment
    • FreeBird's Avatar
      FreeBird

      By double milk, I mean 1 cup of whole milk mixed with 1/3 cup powdered milk. This doubles the protein without doubling the volume that can be difficult to get down.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Heard from my uncle who found out he has Non Hodgkin Lymphoma, diffuse large B cell lymphoma. Are you noticing more people with cancer, or do you just notice it more when it strikes closer to home?

    3 Comments
    • GregP_WN's Avatar
      GregP_WN

      I noticed everyone more after I was diagnosed. I think it's because you just pay attention to it more, you perk up everytime you here about someone on the news that is diagnosed as well as in general converstion. People that normally wouldn't bring it up that they or a family has cancer, now bring it up.

      about 8 years ago
    • FreeBird's Avatar
      FreeBird

      That's a good point. I notice it everywhere now..

      about 8 years ago
    • Lucia's Avatar
      Lucia

      I think both...my uncle just diagnosed w/ liver cancer this week. But you are right recently it seems as more. :/

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Had a tough couple of days, but things seem to have settled down today.

    7 Comments
    • debwadham's Avatar
      debwadham

      How are they doing ( new meds ) ? I have my surgery in 11 days , come on time pass lol

      about 8 years ago
    • FreeBird's Avatar
      FreeBird

      The waiting drives you crazy, huh? Good luck with it.

      It's tough to judge whether the meds are doing anything. He seems a little more awake and aware. The idea is to deal with toxins in the intestines before they enter the bloodstream, because the liver cannot handle them and they are starting to affect the brain, disrupt sleep patterns, cause some confusion, shivers and jerking, some slurring of speech, and difficulty walking. The second thing we're managing is the fluid retention-- with diuretics and potassium. There's not enough room for the known tumor, the food, and the fluid in the belly, and this pressure creates a feeling of fullness, and produces the hiccups. Today, he was able to eat normal food for the first time in a while. The goal is to have more good days than bad and hopefully manage all these weird symptoms that we're seeing recently so he can be comfortable. Glad to have all the hospice resources.

      It's too bad that regular medical care cannot be this good. The doctor comes right to your door. This one even brought in the mail and spent time looking at family pictures on the wall. Very nice to have that in this time. Could not have asked for nicer people.

      about 8 years ago
    • debwadham's Avatar
      debwadham

      If ever need to talk , iam a good listener ! My brother came for a visit was hear 15 days , had not seen him in 5 years since our Dad passed ! He knows about my sitation and knew I had not been doing very much , He wanted to go all over and see the sights , so I took him all over really over did , but got 2 weeks to recover , keep fingers crossed do not want to get sick and have to have surgery put off! Iam happy you have hospice . My sister in law passed Sept 7th , we were blessed to get her into a hospice facility they were Angels !

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Another good day for dad. Things are stable at the moment. The problems he was having continue to be managed with medication.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      I know at this point it's a day by day thing. You measure how good the day goes by some very small, but large at the same time, things. Hope you can get the best out of every day.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Dad had a couple of lousy weeks followed by four very good days now. Hospice has been all about managing the symptoms, controlling the pain, and being as comfortable and independent as possible as the disease progresses. In the past couple weeks, there has been a decline in mobility, and he spends most of his time in the recliner. Sleeping in a bed has become difficult.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Hope your dad continues to do well.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Dad has made it 10 months since diagnosis. The median for survival for those who received gemcitabine monotherapy is 6.8 months. The median for those who receive the FOLFIRINOX combination is 11.1 months, although that can be much more brutal on the body and people often report a lower quality of life. They generally do not use it when you're past a certain age. Dad received the gemcitabine monotherapy, and had seven infusions until it failed.

    5 Comments
    • FreeBird's Avatar
      FreeBird

      Here is one article on the vitamin c that was passed to me through the Lustgarten Foundation for Pancreatic Cancer Research http://www.naturalnews.com/039126_vitamin_c_chemotherapy_pancreatic_cancer.html

      They have some other good resources, and a nice booklet on pancreatic cancer http://www.lustgarten.org/informationandsupportservices

      about 8 years ago
    • music's Avatar
      music

      Thank you very much for your post, it is very helpful. As for your comment, yes, my husband is in a very good shape (after 4 Folfirinox sessions he keeps the same weight and appetite). He is still walking between 1 and 2 miles a day and has few secondary effects. He has to sleep two hours in the afternoon and is loosing a lot of hair.
      How is your dad doing today ?
      All our best for both of you.

      about 8 years ago
    • FreeBird's Avatar
      FreeBird

      Thank you! He's having another good day, just tired. Hospice has been excellent. I'm glad your husband is doing well and active. That has to make a difference.

      about 8 years ago
  • FreeBird's Avatar

    FreeBird posted an update

    Dad had a very good day today. That's the goal. Good days. Comfortable, no pain, and able to enjoy the day in the best way possible.

    4 Comments
    • Lirasgirl33's Avatar
      Lirasgirl33

      Good days are always welcome. I'm so glad he was feeling ok. :)

      about 8 years ago
    • GregP_WN's Avatar
      GregP_WN

      Excellent Freebird. It's the little victories that will mean a lot to you both now. Things that you used to take for granted start to mean so much more. At times being able to take a drink of water by yourself is a victory. Here's to many small victories to come.

      about 8 years ago
    • music's Avatar
      music

      Thank you FreeBird for sharing your experiences. It has been very helpful for us. Your dad is lucky to have you taking care of him. I am sure that there will be a lot of good days ahead.

      about 8 years ago