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Thread: Looking for anyone trying folfirinox for pc

  1. #1
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    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

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    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.

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    Administrator Top User brainman's Avatar
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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
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    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.

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    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!

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    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.

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    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

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    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.

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    fantastic news gtwoods!!!!! Thoughts and prayers are with you!

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    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.

    Eva

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    I am 50 and was diagnosed on Dec 6, 2011 with stage iv pc with liver spots and lymph nodes as well. Had first folfirinox on Dec 19, 2011 with the 46 hour pump and it kicked my butt. I was in the ER that night as I could not keep anything down. After xmas I was so weak I was admitted to the hospital for 8 days to bring fluids and pain under control. Ended up with a celiac nerve block done too. I was to have the second folfirinox last week, but I have lost 30+ lbs since folfirinox and now scheduled for gemzar next week. Might go back after gemzar if I can get some weight put on and strength up. Good luck and prayers with you all.


    Dec 6, 2011 - Diagnosed with Stage IV PC on head of pancreas. Liver and lymph metastases.
    Dec 19, 2011 - 5-FU chemo started.
    Dec 28, 2011 - Lost 35 lbs. In hospital for 9 days to recoup from 5-FU chemo. Stint installed for pain.
    Jan 30, 2012 - Gemzar chemo started.
    Mar 6, 2012 - CT scan shows 50% reduction in size of liver tumors. No change to pancreas tumor.
    Jun 1, 2012 - CT scan shows additional 50% smaller in size of liver tumors. Pancreas tumor shows a 10% smaller in size.
    Last edited by bbake1; 06-20-2012 at 06:04 AM.

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    Davefrom CT. This is my first day on this site, and I know it's been nearly a year since your post, but my sister is just recently going thru the exact thing as you were a year ago. She is 53. I would just love to know how you are doing. Did you have the whipple done? You have been added to my prayer list. God's strength and love are remarkable!
    Last edited by LindaSC; 02-23-2012 at 04:04 PM. Reason: Wanted to put her age in post.

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    Hi Linda,

    I am not Dave but I have talked to Dave on Cancer Compass's web page. I think he post over there more frequently and he talks about the surgery.

    You and your sister are in my thoughts and prayers. There is always hope This board has been a tremendous support for me and also a wealth of information.

    Lisa

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    Senior User mydad's Avatar
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    Hi,

    I should have mentioned his id is the same over on that board DaveFromCT

    Lisa

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    Quote Originally Posted by mydad View Post
    Hi Linda,

    I am not Dave but I have talked to Dave on Cancer Compass's web page. I think he post over there more frequently and he talks about the surgery.

    You and your sister are in my thoughts and prayers. There is always hope This board has been a tremendous support for me and also a wealth of information.

    Lisa
    Hey Lisa, Thank you so much for relaying that information. I will try to find it. Just curious how everyone is doing that posts on here. Thank you so very much for the prayers!! You are right, there is Always hope!! God is still on the throne and prayer changes things!!

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    Hi Linda,

    My dad was diagnosised on September 22, 2011 with stage 3 pancreatic cancer. He had 4 rounds of folfirnox with little to no side effect. The tumor shrunk some but the surgeon want it to shrink more for surgery. He had markers put in his pancreas in January to start radiation/chemo combo. He has had more side effect since the markers were inserted. His tumor has not grown but is inflamed because of the markers so he is in pain. He is doing Gemzar once a week and radiation everyday for 5 weeks. Right now it is a struggle but I truly believe that he is going to make it through this. You are right that God is still on the throne and I needed to be reminded that today. I am not going to lie we all have good days and bad with this disease but for my family our faith is the only thing that has kept us sane at all.

    Please let us know how your sister does with the treatment.

    Lisa

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    Oh goodness Lisa....I guess you can tell I am brand new at this. I replied on your post not mine, but I thank you still I am still trying to find Dave on Cancer Compass. I keep reading all the posts and forget I am looking for him. What a wonderful God we have!! He sure is working miracles.

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    Lisa I certainly will have your Dad and whole family in my prayers (as will my sister). It sounds like they have/are having the same treatment, but just in the opposite order. I think he'll do well with the Gemzar. It is so difficult to go about normal daily activities knowing our loved ones are so ill. Is his contained to the Pancreas? Leslie's is. She has been having severe enough pain that she is taking the pain meds, so I know it's pretty bad for her. Take care and stay strong. Keep me informed. Linda

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    Senior User mydad's Avatar
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    Hi Linda,

    Yes I will keep your family and sister in my prayers as well. I agree I am a tax accountant and we are working 65 hours a week right now. I am finding it so hard to focus this year with my dad being sick I just want to be with him. Yes the ct scan last week confirmed that his is still contained in the head of his pancreas which is great news. We are just concerned with all the pain he is now experiencing. My dad is taking vicadin right now

    Lisa

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    Hi Lisa, just an update on my sister...She is in The hospital in CCU as she got so dehydrated. She went in Saturday evening. After double IV's and a very scary episode that dropped her BP dangerously low, she is feeling better. The diarrhea was out of control after her first folfirinox session. She was to go today for 2nd treatment, but they will not do it yet. I pray God will continue to get her strong enough to continue the treatment!! She also said her hair is coming out in clumps already . She is tough tho and will make it thru! How are things going on your end? Keeping you all in my prayers! Linda

 
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