Anyone on TRUQAP?
Comments
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@vajra13 and thank you for more advice with the Truqap. Today I started my second cycle and had the big D 5 times. I hope it's from the fact that I was on vacation for a few days and eating/drinking unhealthy (but yummy). It's the first time so I am hopeful that was the reason. It was unfortunate that I was hiking! I also have been experiencing waves of nausea two to three hours after taking the truqap. I started on the last cycle so I am assuming it's from that. It does go away in about a 1/2 hour though. I do eat with/before taking the treqap as well.
I don't like to hear about time frames because I feel like my body will live up to that if you tell me! I was going for 20 years on this!
I have been prediabetic for a number of years except for two months ago, but I did lose a lot on weight on verzenio so I'm thinking that's what brought my A1C down barely into the "normal" range. I am expecting issues with glucose so am already starting a low carb-type way of life. Thankfully, I am not too interested in sugar anyway.
I hope the side effects stay manageable too!
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Hi Dulcea
Did you try taking Imodium? It helps a little! I take one right after my morning TRUQAP!
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@eviee12 yes, I took two Imodium and that helped so I could finish my hiking trip without any issues! Imodium and I are best friends from my Verzenio days. Thanks for the advice. It is always welcome.
Now I am dealing with dental issues. It is not due to Xgeva but more of an esthetic and bite issue with my front teeth due to them being 40+ year old crowns. It would take a month to complete the whole process and it would involve cutting gums back etc. Yuck. Or I can deal with some uncomfortable inflammation in my gums for the rest of my life. What would you all do in this situation? Deal with it or take action? Such a dilemma.
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Well all, I’m on hold with my Truqap. I’ve had some significant side effects with it. My MO now has reduced everything. I’m on 100mg 7 days on and 7 days off. That seems to be what I can handle but who knows if it’s still effective with at significant of a drop. Good luck ladies coming onto the meds. RIP Spookiesmom.
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Katyblu I pray you can find relief and stability on the lower dose. I have been on truqap since the end of February and I had my best scan yet (4th line of treatment in 2 years) in May. My tumor markers have dropped 80% but they are creeping up a little recently. I’m waiting for approval for my next pet scan but it’s been 6 months and the side effects have gotten better with time. My main side effect has been low blood sugar which was not a reported side effect in the trial. But with a glucose monitor I have been able to manage it well and the diarrhea has gotten better. I pray it continues to work and keep me stable.
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Unfortunately, my last scan in Jun saw a little progression but I don’t think it’s Truqap. I think I need more consistency with it before passing judgement. I’m currently off it waiting on more instructions.
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@katyblu I know with Verzenio, the efficacy was the same at a lower dose. They always start people at the highest does and reduce from there as needed. I haven't done my research but I do wonder if Treqap is the same: lower dose = same effectiveness. Ask the MO.
Fingers crossed you find relief ASAP!
@mommacj Congrats! That's what I like to see!
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Oh boy. How long does this rash last?
I am willing to go along with it because I was told it will go away eventually. It started yesterday on my body, but this morning, it's on my face. NO THANK YOU!! I took a Benadryl last night and a claritin this morning and messaged my MO.
Thankfully it's not itchy. Any other suggestions?
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Good morning. Yes, Truqap rash sounds painful. You may want to try oatmeal bath soak (packet sold on Amazon) for body rash. Perhaps others have ideas for treating face????
Night scratching was a challenge, I wore cotton gloves so I couldn’t scratch my lower body while sleeping. Found some relief by staying out of heat and temp extremes, avoiding direct sunlight.After 3+/- weeks, body rash disappeared and hasn’t returned.
I hope you have a speedy recovery!
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Thank you @kat.mac . I know we are all different but just having that 3 week goal feels better. It will end!
Thankfully, it is not itchy…yet. I should also admit that I am on my second day of covid and second day of rash and I wonder if it's just everything combined. My last two covid infections didn't have a rash however.
The Claritin may be working since the rash on my face is lighter just after a few hours. I will continue with that.
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Just an update on my rash: it only lasted three days. I took Benadryl the first two nights and I am still taking Claritin as of today but I might stop it tomorrow. It was never itchy but maybe felt prickly in some spots. It looked terrible though. I hope that's it for the rashes!!
D is under control with well-timed Imodium.
I hope everyone is doing OK too!
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Dulcea- Hopefully its just a bit of an allergic reaction or something the body has when it adjusts the drug, Truqap is very strong..
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Cross posted to a new Guardant discussion:
Does anyone know what it means when the first Guardant test showed a PIK3CA mutation, and then ten months later, it doesn't show that?
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I’ve been on Truqap since 7/3/24. Had taken Kisqali for a year. Started Truqap highest dose 400 mg twice a day. I had mild diarrhea after a couple weeks that Imodium helped. Got a rash from neck to knees but it wasn’t itchy. They took me off med for a week and gave me a prednisone taper. Started back at 200 mg twice a day for a month. Not too many side effects on that low dose. Just bumped me up to 320 mg twice a day this week. I’m on day three and so far doing ok. I was told by doctor to take truqap with a meal, not just a snack and I haven’t had any nausea. Hopefully rash does not come back. Doc also told me diarrhea usually goes away after 56 days or so. It’s been mild for me but I was also on lowest dose for a month. I haven’t had problems with sugar. I am not diabetic to start though. Fasting bloodwork has been great but I have been trying to avoid extra sugar to not make it any worse. I do get a weird sensation in my face that’s hard to describe within an hour of taking it but it goes away after that. It’s almost like a tingling or full sensation. They thought maybe it was the jump in blood sugar and body trying to get used to that. Anyone else have anything like that?
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@caniac37 - We're sorry you have to be here for this, but we want to extend a warm welcome and thank you for sharing your experience with Truqap. We hope you'll soon hear from other members who can relate and offer support, along with tips on managing the side effects you're experiencing. The following article from our main site may be helpful in the meantime:
Looking forward to hearing more from you soon!
The Mods
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Hello,
i am new to the forum and have been reading you for a while.
I've been taking Truqap since May 2024 and I'm on my 14th week.
SE: diarrhea subsided with Immodium. Blood sugar levels remain stable. Some occasional nausea.
For the past 1 week, some red patches on the skin from my neck to my legs, no itching, I take an antihistamine every day.
I can tolerate this treatment quite well after a Piqray treatment which was very difficult to tolerate (skin rash and fever).
I am very happy to have found you on this forum, it is very enriching for my journey.
sorry for my poor english
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@soldanella - We're glad you've found us, and that find the forum helpful and supportive. It's great to hear that you're tolerating the treatment better now. We look forward to hearing more from you too!
The Mods
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@caniac37 Thank you for sharing your experience with Truqap. I think it helps everyone who is on it. I am only on cycle 4 of Truqap and if you've read back, I've also had a few side effects. I have found that taking the Imodium on the Truqap days is helpful. Then the three days off, everything returns to normal. I really like having those three days off!! I get some mild nausea about an hour after taking the Truqap, but not the tingling. I eat a big meal and wait ten minutes or so after eating to take the meds.
@soldanella thank you too for sharing your experiences. Congrats on week 14! And your English is fine!! Glad to hear that the Truqap has tolerable side effects for you. I experienced the rash too but it only lasted three days. I also had covid at the same time so I'm not sure if it was due to that. I also took an antihistamine to stop it and it seemed to work.
Keep in touch ladies and stay well.
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Hello everyone! I wish you all the best, continued benefits from Truqap, and well-managed side effects.
I, unfortunately, have to switch to another form of treatment as recent scans showed disease progression while on Truqap for 12 weeks.
Thank you for the support. You all take care! 🙏💗
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@varja
I'm sorry you have to change your treatment after 12 weeks.
I'm waiting for my first control PET scan under Truqap on September 12. As my markers have dropped significantly I am rather confident.
I hope you benefit from a new effective treatment without too many side effects.1 -
@varja good luck on your next treatment. Let us know how you are doing.
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Soon to be 88 years old. Have been relatively healthy except the breast cancer. Was on Ibrance for nearly 2 years before cancer progressed to hip and lower back which doesn’t bother me as much as my knee. Tolerated Ibrance well and was still able to be independent (drive, clean, etc.). MI switched me to Faslodex monthly alone but cancer is progressing so now wants me to do radiation for bone mets and hopefully some relief to help knee pain. He will then start me on Truqap with Faslodex. Reading these posts I’m a bit nervous as dealing with rashes, nausea, and diarrhea at 88 wom’t be easy despite being good otherwise. Any thoughts or recommendations? Do I call it quiits and avoid the harsh SE?
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@ladybug1005 - Sorry for what you had to join us, but welcome to our community! You'll be in good company here.
It's completely normal to feel a bit nervous about starting a new medication, especially when reading about potential side effects. But one important thing to remember is that everyone's experience with treatment can be very different. Some people may experience side effects like rashes or nausea, while others may tolerate the medication with only mild discomfort. See here our article What to expect when taking Truqap
Hope you get responses from other members soon that can help you with their own experiences and advice. Remember you're not alone in this so whatever you decide, we're here to support you!
Sincerely,
The Mods
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@ladybug1005 Don't call it quits!!!!! Definitely give the new treatment a try! I was hesitant to start the Truqap and Faslodex after having progression on ibrance. So far I’m on week 6 and the side effects haven’t been too bad! Just a little D on the first two treatment days of the week but Imodium definitely helps!!!! Good luck and keep fighting!
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@ladybug1005 -First of all congratulations for everything you did with a metas diagnosis and with the various treatments you had.
Concerning Truqap,I understand your reluctance, because I react strongly to targeted therapy, particularly Piqray, and in fact I was not very enthusiastic about switching to Truqap.
I am in the 16th week of Truqap. I sometimes have very slight nausea and it is advisable to take it during a meal to avoid this discomfort.
For diarrhea, Imodium works miracles, I only take it if Ihave an important appointment otherwise a rice, carrot, banana diet...is enough to reduce the number of diarrheas.
I had strong and unpleasant skin reactions under other targeted therapies which absolutely did not occur under Truqap (that was my big fear). I have a few spots here and there (not on the face) without itching. I take an anti-allergic medication every evening and it's going well.
Furthermore, with librance there was a drop in white bloodcells and breathing difficulties that I did not find under Truqap.
I'm a little tired on the days of treatment but it's completely manageable in my daily life.
My tumor markers have decreased significantly under Truqap
I really encourage you to try Truqap and hope you enjoy it as well.
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@ladybug1005 Truqap is my 3rd treatment and is by far the easiest, although I am only 5 weeks into it. The other two treatments were awful for me at the beginning. Truqap has been easier, but I know that everyone is different. Ibrance killed me. Verzenio was bad too. On Truqap, I had the rash for 3 days and it wasn't even itchy. I had diarrhea the first cycle but none after that. I am feeling pretty good (knock on wood!!!). Give it a try. YOu can always stop if you have to.
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Thank you all so much for your encouragement. I’m trying to do all this myself at 88 and it’s getting harder and harder. I start radiation on Thursday for my bone mets and hoping that brings relief to my knee pain which is unbearable. 10 rounds of radiation. Thanks you for your support.
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ladybug1005 I’m so sorry to hear about your progression. I understand the reluctance when starting a new treatment. I have been on truqap since February and have found it to be my easiest treatment so far. I take claritan daily and have not had a rash. I have used Imodium but rarely. And blood labs have all been great. Unfortunately after about 6 months it is no longer working for me but I truly wish I could stay on it. I took trips with my family and had a very good quality of life this summer. I started with one pill a day in the morning and evening and then increased it the second week and it was very easy to adjust to. I pray it works well for you. :)
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