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Thread: Looking for anyone trying folfirinox for pc

  1. #1
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    Mar 2011

    Looking for anyone trying folfirinox for pc

    Dear mbs my husband just got diagnosed with pc he is going to be starting folfirinox next week any info or experience you would like to share would be very helpful wishing you and your dad all the luck

  2. #2
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    Jan 2011
    This will be my Dad's 5th treatment of folfirinox. He gets the treatment everyother week. He had an infusaport installed so he goes in for a few hours on Monday, a couple of hours on tuesday and on wednesday, my brother disconnects the pump at home and flushes the lines. Then on Thursday he goes in for a white blood cell shot. His major side effect is diarrhea. At first it had been only on treatment weeks but now it seems to be constant. He is sensitive to cold and touching anything cold on treatment weeks as well. He no longer feels pain but is nauseaous and week. He does get out and walk around and has a lot of visitors. He looks better than when he was diagnosed in the hospital; i think that he has stopped losing weight and his ascites build-up has slowed considerably.

    Some items that my he can consistently eat are, Coco wheats, oatmeal, tuna salad, tuna casserole, cottage cheese, rice, blueberries and milk, whey protein shakes (he doesn't like ensure or premixed - he uses the powder and mixes with milk and banana). During treatment, he ate soup and now can no longer eat it. I've read that you can develop a distaste for things with strong flavor during treatment.

    Please let me know if you have any questions before and during your husbands treatment. My dad's doctor told him that his blood test results look outstanding. Good luck to you and your husband.

  3. #3
    Administrator Top User brainman's Avatar
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    Oct 2005
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    Hi herheat. I am truly sorry about your husband's cancer. Since I have never taken folfirinox, I can only offer you my support and prayers.

    I did split off your post (and mbs') to create your own topic. To leave it in its original location would be to risk "hijacking" someone else's topic. This way people can reply directly to you
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  4. #4
    Quote Originally Posted by herheat View Post
    Dear mbs my husband just got diagnosed with pc he is going to be starting folfirinox next week any info or experience you would like to share would be very helpful wishing you and your dad all the luck
    I was diagnosed with PC in July and started folfirinox in August with the objective of shrinking the tumor so that I could have the Whipple surgery. I had a total of six sessions every other week, with one day in the hospital receiving treatment and then two days at home using a small machine. Total time was about 50 hours and typically ended mid afternoon on Saturdays. I experienced tingling in hands and feet if touching something cold... not a big deal and couldn't drink anything cold until Monday evening. My tongue felt numb for most of the time somewhat killing the tast of certain foods. This gradually went away after I stopped the chemo. The biggest issue was diarrhea which would typically start Sunday evening and would last to Tuesday. It really wears you out. I'd lose 5-6 lbs within a few days, but by Wednesday I was feeling better and still had a week to recover. The anti nausea pills they gave me kept me from experiencing any nausea. There are other side effects that people experience like mouth soars... I didn't experience. Also, lost some hair which has grown back. The good news is that the chemo did it's job, and I had a successful Whipple surgery at Sloan Kettering in NYC in December. I feel great now and am doing gemcitabine for the next six months to maximize my odds of beating this thing. I forgot to add that I was 51 when diagnosed and in good health. My take is the older you are, the tougher folfirinox may be be.

    Have they determined if the cancer is just isolated in the pancreas? or has it spread?

    As far as food goes, they said to eat anything that I could, and I did. I lost 20lbs almost immediately, and it took 3 months to put 10lbs back on. I now take enzymes called "creon" that they gave me after surgery to help process fat in food. As I look back, I think it would have been very helpful to have the enzymes to help with fat absorbtion and maintaining weight. You may want to check into with your oncologist if weight becomes an issue.

    All I can say is that many prayers were said for me by others and now I'm ready for whatever is to come. I couldn't say that in August, but I think God is now touching me and giving me the strength to deal with whatever the future holds for me.

  5. #5
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    Apr 2011
    DavefromCT, I'm inspired by your story as my mother is doing the same regimen you completed prior to your surgery. She is an otherwise extremely healthy 59-yr-old recent retiree. We are fervently praying that her mass shrinks away from blood vessels so that she may have surgery. I'm so glad that your faith is strong, since nothing is impossible for God, 'our refuge and strength, a very present help in trouble'. I'm specifically searching for help with foods. I'm going to discuss the things with her listed by mbs above and see what she thinks. If you have any further advice, I would love to hear it. This is literally Day #1 of treatment for her, and she has her home 5-FU pump hooked up and running for the next couple of days. She has been very nauseous and actually vomited twice today but has eaten very little. I noticed you didn't experience nausea, but despite the Zofran and Compazine (and infusions of Decadron and Zofran), she just hasn't been able to eat today. I was wondering if you were able to eat on treatment days and if so, did you have to alter your diet any on infusion days? Any advice you could give would be most welcome!

  6. #6
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    Jun 2011
    My boyfriend was diagnosed with pancreatic cancer in March, and had 4 treatments on folfirinox before having the Whipple procedure on June 1. The first treatment was the worst because he didn't know what to expect. The anti-nausea medications (Zofran and Compazine) took away the nausea, but they didn't make it so he could eat. The second round was a little better because at least he knew how it was going to feel, but he still was uncomfortable and wasn't eating. At that point he had lost 40 pounds since his symptoms started in December 2010. But then we found medical marijuana. He was not a pot smoker before, and he didn't even have to do it that often after treatment for it to make a huge difference. It not only took away the nausea, but it made him hungry (he got he munchies!). He regained almost 10 of the punds that he lost, and didn't have any of the side-effects from the anti-nausea medication. It also helped him sleep, which none of the sleeping drugs could do. He went to the hospital to get his infusions on Friday, and the steroids that they gave him during the initial infusion usually made him feel okay through the weekend while he was getting the rest of his treatment through a pump. Monday would usually be the worst day. Then he would end up using the marijuana two or three times a day for a couple of days until his body got on to a cycle of eating regularly. He hardly needed it after that until his next treatment. He would use a vaporizer, so there is practically no smoke, and he hardly needed very much marijuana to get the job done.

    We live in California, where medical marijuana is pretty widely accepted. In fact, his surgeon is working with the hospital's alternative care center to get medical marijuana included as part of the range of standard treatment options. I can't say enough good things about it -- it made a world of difference. My boyfriend went into surgery almost 20 pounds heavier than he was after his second round of chemo. He lost all that weight again after the surgery, and but we're working on putting it back on him. And he'll definitely be using the marijuana when he has his post-surgical chemo.

    Best of luck with this. It's quite a journey, and my heart goes out to anyone touched by this disease.

  7. #7
    Newbie New User
    Join Date
    Jul 2011
    Hi herheat...

    Might be late... but I just found your post! My husband is 52, and was diagnosed with stage iv PC at the end of November. He started his 1st folfirinox treatment at the end of December. It was quite brutal to start, as he was so ill when he was diagnosed. He continued on the 2x a month regimine until the end of March. He then switch to once a month. The change has been trememdous. Where before he only had a few "good" days between treatments, he is now having 2 to 3 good weeks between treatments. I think starting on the 2x a month was necessary, but the once a month is better now that he is stabilized and his quality of life is 100% better. The treatment itself is very difficult, but so worth is a his CA-19 count is WAY down and he feels great on the good days. Hope this helps... Becky

  8. #8
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    Aug 2011
    Porterville, CA
    My wife (75 yes old) diagnosed stage 4 august 2010, started gemcitibene. Little if any efficacy. Switched to folfirinox 3 months ago. Cat scan 2 weeks ago, tumor pancreas and liver diminished more than 50%. No longer has abdominal pain after eating. If trend continues, almost too good to be true. Good luck with your treatment.

  9. #9
    Experienced User
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    May 2011
    Chicago, IL
    fantastic news gtwoods!!!!! Thoughts and prayers are with you!

  10. #10
    Newbie Regular User
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    Jan 2012
    West coast
    I just saw this thread. Would you let me know what hospital has the alternative treatment in support of the traditional treatment? I am looking one for my husband for he is suffering big time from folfox. Thank you.



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