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Anyone on TRUQAP?

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Comments

  • sunny987
    sunny987 Member Posts: 2

    Hi, I'm new here and am very happy that you are all sharing! I just started Truqap 2 and a half weeks ago (Mon-Thu schedule). Last week had 2 bad stomach/diarrhea days (Mon & Thu). This week so far both Mon and Tues (today is Wed). Imodium helps after, and heating pad on stomach helps a lot too (which I know from having IBS). I read what someone here wrote about taking Imodium BEFORE the Truqap and asked my GI dr and he said to try that 1 hour or half an hour before Truqap. Thanks for that advice. I'll try that tomorrow morning.

    I was wondering how you all manage life on the 4 days on it? I feel like I'm stuck home since the bad diarrhea just comes any time it wants so scared to go anywhere. Any advice would be appreciated.

  • dulcea
    dulcea Member Posts: 190

    @sunny987 Welcome. I have found that the probiotic Floristor has helped considerably. The directions say to take two caplets a day but I only take one. It is pretty expensive. I recently took a vacation and left all my supplements home and only brought along the prescriptions meds. Stupid! The diarrhea was pretty bad. So I started taking the probiotic again and things have balanced out to having NO diarrhea. I know everyone is different but this seems to be working for me.

    I initially had some D when I first started taking Truqap but just took an Imodium in the morning on the same day as the Truqap and that helped.

    Good luck. And drink LOTS of water!

  • moderators
    moderators Posts: 8,558

    Welcome, @sunny987! We're so sorry you find yourself here, but we're glad you've joined our community. As you can see, this is a wonderfully supportive place, with lots of experiences and resources to share.

    Hopefully changing up when you take the Imodium will help with this side effect, we know it can be so hard to manage and can really impact your life! Keep us posted on if you see any improvement.

    The Mods

  • soldanella
    soldanella Member Posts: 9

    Here is some news after 17 weeks on Truqap. My Pet Ct shows no resumption of metastatic activity and liver enzymes are within normal limits. I have red spots on my skin and I have to apply cortisone ointment on them and moisturize my skin well. It still doesn't itch, it's just a little unsightly, but fortunately my face doesn't have any. Otherwise still diarrhea and flatulence, but with Immodiun it is completely bearable.

  • dulcea
    dulcea Member Posts: 190

    @soldanella that is GREAT news!

    It gives me hope, too. It's always nice to get a clean report after all that anxiety of waiting on the scan results. I have a way to go before I can check in. I'm only on week 7 I think. I do find the side affects more tolerable on Truqap than the last two treatments so it would be nice if it's working because I could stay on this a long time.

  • soldanella
    soldanella Member Posts: 9

    @dulcea : Yes, I also find the side effects are more tolerable, I was on Piqray before and I had bad allergies and a lot of fever. It's a good surprise with Truqap. I wish you good results for the next checks.

  • soldanella
    soldanella Member Posts: 9

    HELLO,
    I'm on my 21st week on Truqap. If the progression-free survival of this medication is approximately 7 to 9 months has anyone gone beyond this duration with this treatment?
    For now it is giving me good results but as time goes by I wonder what will come next.
    Thank you for your sharing.

  • dulcea
    dulcea Member Posts: 190

    @soldanella Truqap was approved by the FDA at the end of last year. It was November or December so I'm not sure anyone has actually been on it a year. YOu might want to try to dig up the clinical trial information on it but I would imagine that the 7-9 months is the average. Some has less time for progression and some had more. Now you've got me curious about this too. I am only on week 10.

  • soldanella
    soldanella Member Posts: 9

    @dulcea
    Thank you for your message and well done for your 10 weeks on Truqap.
    What I read on this forum at the moment rarely exceeds 6 months of treatment.
    I talked to my oncologist about it, who obviously kindly told me that these are just statistics and that each person reacts differently.
    So, let's hope that our treatment defies the figures given in the study results and that we are pioneers for this medicine! 😉

  • cure-ious
    cure-ious Member Posts: 2,883

    PFS is a median, ie the time when half of the patients have progressed, meaning that half of them got that amount of time or less, and half went on longer. Sometimes a range is given so you can see the shortest and longest responses…

  • sunny987
    sunny987 Member Posts: 2

    Hi, I'm new here. I'm on Truqap + Faslodex (and Xgeva) for MBC to bones. I read someone's comment about taking an Imodium BEFORE the Truqap and asked my GI dr about it and he said to take it 30-60 minutes before Truqap. And guess what - it has made a HUGE difference! Hardly any stomach issues, aside from minor stuff occasionally. Thank you to the person who suggested that!!!! You have REALLY helped me!