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Thread: My sister started Folfurinox last week...stage iv Pancreatic cancer

  1. #1

    My sister started Folfurinox last week...stage iv Pancreatic cancer

    Hi everyone,
    Just starting this journey and could use some advice. My 44 year old sister started Folfurinox last week at Sylvester Cancer Center in Miami, Fl. She seems to be tolerating it ok but she is extremely fatigued and is sleeping most of the time. Any advice on supplements/foods to eat? Has anyone gone into remission on this protocol? Also, is anyone taking any other chemo med along with Folfurinox to make it even stronger?

    Any info would be helpful? Would love to talk to anyone who has experienced Folfurinox!


  2. #2
    i hear its an aggressive chemo and some people do experience remission..

  3. #3
    Senior User
    Join Date
    Oct 2011
    Folfirinox is effective and very powerful

  4. #4
    Experienced User
    Join Date
    Jul 2012
    Hi there, I am so sorry that your sister is with this cancer. My dad also slept a lot during the first two treatments (one month) with few other side effects, but his white blood cells were too low and so after a one week delay for treatment number 3, the doctors reduced the dose of some of the chemos in folfirinox by 15%. He handled future sessions better with not as much sleeping, but he has struggled off and on with diarrhea and low nutraphils, causing other treatment delays. Basically, any calories that are tolerable would be good to eat. Taste buds, appetites, and digestion are all affected by chemo and the cancer. My dad started enjoying frozen pizzas and some chinese food, go figure.

    Regarding remission, it does appear that there are some successes with folfirinox in achieving apparent remissions. Your sister is young, too young, and hopefully she is able to tolerate this protocol.

    Hope this information helps.

  5. #5
    Senior User
    Join Date
    Sep 2011
    Sorry about your sister-she is a year older than my husband, who was diagnosed in Sept 2011. He had the folfirinox from Jan 2012-August 2012. It did knock back the tumor quite a bit, although it has now stopped working. He took creon for digestion and zofran and dexamethasone for the nausea. Cold bothered him more and more as the treatments went on. Since your sister is so young, she may be able to withstand the side effects much longer than someone older. I did give him vitamin supplements: 1-a-day, pro-biotic, b-12 (energy), vit c, etc. You have to clear it with the doc since sometimes they are contraindicated with other meds. Sleeping is good, lots of rest helps, and whatever she wants to eat-go for it-helps to keep the weight up.
    I hope that she does well with the treatment and that it works its magic on the pancan.
    "May you be held in compassion; May your pain and suffering be eased; May you be at Peace"

  6. #6
    Hello, thanks so much for the responses. So glad to hear so many good responses from this chemo.

    Lise114, what is your husband on now? Is it helping?

    Thanks again to all of you.

  7. #7
    Senior User
    Join Date
    Sep 2011
    Hi jdlinder, Right now my husband is on a break from all chemo. I think he had 14 (?) courses, which is quite a lot. It has certainly extended his life and made it possible for us to take a special trip to Japan, spend time with family, spend time together . He is currently experiencing quite a bit of pain. They have doubled his fentanyl patch again to 100 micrograms and we are hoping that will make the difference. To be honest, I don't know if he is up for more chemo and more fighting; he is tired. But that being said, he has beat the numbers to date and I really do think that being young makes it easier to tolerate the chemo. I really hope that it works well for your sister. I know that there some remissions with folfirinox. Unfortunately, my husband isn't one of them. It shrunk them, held them at bay, but I know that the one in the liver has grown. He gets rescanned in November. In the meantime we are making the days count.

    Enjoy your time with your sister-who knows-maybe she will be one who will be in the "1%" (live 5 years) or maybe she can beat it!!!! Attitude is a huge part and being proactive in terms of pain relief, care, nutrition, etc.

    and keep visiting here; it sure helps me.

    lots of hugs and hope
    "May you be held in compassion; May your pain and suffering be eased; May you be at Peace"


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