Anyone on TRUQAP?
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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.
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@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!
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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
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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.
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@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.
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@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.
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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.0 -
@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.
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@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! 😉0 -
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…
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I have been having worse diarrhea as the weeks go on with Truqap. Last cycle, I had it for four days, numerous times per day. I even still had it badly after taking four Imodium in one day. So I figured I needed to do something else. I do take a probiotic too, which helped initially.
I started the BRAT/white diet on the same day I started this cycle and by the third day, I didn't even have a BM! My last day of the the cycle is today and in those four days, I have had 3 normal BMs. So, so sorry! I know TMI, but I had to share my success. ZERO imodium this week as opposed to 11 Imodium last week! Why didn't I think of the BRAT diet sooner?
I hope someone else can have this success too!
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@Dulcea : Thank you for all this information on the Brat diet and glad to know it is helping you. I forced on bananas, rice and white bread during the 4 days of treatment. I discovered rice milk which also calms bloating, but it is a little sweet so not recommended if your blood sugar tends to increase during treatment.
I start the 24th week: I have more red patches on my body, which do not itch, but which do not diminish despite cortisone. We will see what my MO thinks in 2 weeks.0 -
@soldanella great to hear of your success on Truqap for so long! That gives me hope. You were smart to already try the BRAT diet! Why didn't I think of it sooner?
@sunny987 maybe with the Brat diet, you can skip the Imodium altogether.
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Well, time to say goodbye to my fellow Truqap-ers.
AFter a little over three months it did nothing for me, nada, zippo, zilch. So the lesions I had prior to truqap are still there along with a bunch of other new ones. Too bad since this had such mild side effects.
On to Xeloda. My MO talked about what to do after Xeloda too, which always makes me feel good knowing there are other treatments when one fails. I am also stopping they faslodex (yay!) since that did nothing to save me either.
Take care ladies and best wishes to you all. I hope Truqap proves to be a great treatment with longer than average PFS.
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@dulcea
I am very sorry that you have to stop Truqap.
I sincerely hope that Xeloda will be more beneficial to you and that there will finally be a positive effect to counter these metastases.
I completely understand you when your MO says that there are still other treatment options and that this gives us hope.
I will read you on the Xeloda thread, which contains very good advice for taking this medication.
Courage for the future.💜0 -
Thank you so much @soldanella and @eviee12!
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It's been 1 week since I developed more serious and stubborn eczema, it is resistant to Cortisone ointment. On the advice of my MO by phone I stopped the Truqap and we will do a check-up next week. I hope to be able to start it again quickly because it is the only major and annoying inconvenience, otherwise I tolerate it rather well. As my next PET scan is not scheduled for 2 months, I hope I can keep this treatment until then.
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Hi everyone. After 6 months on Truqap I am moving on to Xeloda. I was just getting a routine around lowering incidences of nausea (worst SE for me). But liver enzymes are going up so off to another treatment. Wishing you all as much time as possible on this treatment.
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@smallmoment
I am so sorry to hear that you have to stop Truqap.
I am also at 6 months and my liver enzymes have gone up the elevator these last 2 weeks. I have just stopped taking Truqap because of significant skin erythema and despite trying to restart it yesterday my red patches have increased even more. So it's not sure if my markers are high because of Truqap or because of disease progression. I will have a Pet Scan on December 12th and I don't know what's next yet...
I hope that the Xeloda will benefit you and that you tolerate it well. My sweet thoughts accompany you.0 -
Thank you, Soldanella. I am sending good thoughts for your December scan. Hope you can get more time on this treatment
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Hi all, regarding the major stomach issues, I was having a lot of success with taking an Imodium before the Truqap on the 4 days on it. That good fortune lasted for weeks, but now my stomach issues are even worse! I asked my GI dr if it could be due to too much Imodium and he suggested I take a break from it.
Can anyone recommend ANYTHING else to help prevent so much D? I have it on the on AND the off days. Heating pads help with stomach pain FYI, but what about all the D? Thanks everyone.
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The Florister probiotic seems to be helping a ton!!!!!!!
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Well here it is... 6 months of Truqap and I have to change molecules because the last PET scan shows progression of the disease in the lungs, liver and bones. I had 6 months of happiness where I was able to enjoy a beautiful summer and autumn. Winter looks more delicate. So tomorrow I'll switch to Xeloda. Good luck to all those who are still on Truqap.
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Thank you all for your stories. I was on Ibrance, Letrozole and Xgeva for 5 years, three of which were NEAD. One of my liver tumors showed back up on the recent scan and I am now on Truqap and Fulvestrant. Off Xgeva because I also developed osteonecrosis of the jaw. Somehow I managed to go 3 full weeks on Truqap before I realized I was taking half a dose, like someone else on this forum. So, I finished three weeks on Truqap on a half dose and one week on a full dose. No SEs so far. Blood sugar has been excellent throughout. Based on what I've seen here, I need to keep vigilant about taking my anti-nausea and anti-rash meds. SEs can show up later. I hope to be able to report encouraging news in the future.
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i have been on truqap since june - after many years on ibrance. Inrance stopped working on my bone mets and it was progressing.
I found the initial dose of Truqap (side effects) intolerable. We tried breaks and lowering the dosage. I have now been on a half dose for a few months. With everyday use of Fage yogurt, immodium and xyxal (for rash) the symptoms are mostly under control. I have three good days every week. But my tumor markers kept going up. I was concerned. I Just had my six month petscan. Good news. No new areas and the ones I have are lowered SUV’s. It is considered a positive partial response. My dr is pleased it is working. I will stay on it for now. 😀 Thank you to everyone on this forum. It helped me learn to use more immodium! Now, with planning I can travel again. It isn’t easy but this is doable for me.1 -
Welcome, @onlywhenitrains! We're so glad you've found our community, and hope this place can be a source of comfort and support for you. We'll keep keep our fingers crossed that you continue to experience no SE's on Truqap!
The Mods
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