Anyone on TRUQAP?
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I hope you don't mind me popping in on your thread - I've been tracking the discussion, with the thought Truqap cohort be in my future... if Tricare actually adds it to their formulary.
Katyblu - some people on Verzenio have gotten relief by taking psyllium husk (e.g. Metamucil). It helps soak up the liquid in the gut. Some people started with a teaspoon morning and night, but that was too much for me. You'd have to experiment to get what's right for you. Just be sure to take it at least 2 hours before or after meds. (It's on the Metamucil label).
Of course, I'd recommend checking with you MO first.
Also... liquid immodium makes it easier to make small changes in your dose.
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well it looks like I’m done with true cap. He had me started again this Monday took one 100 mg pill in the morning one 100 mg in the evening Tuesday morning. The rash was back with a vengeance I couldn’t eat. I couldn’t stay awake so I called him and he said to stop it, I have no idea what my next course may be if there is one. I’m really pretty bummed about it because my number dropped from 236 to 117 pretty impressive. I can’t tolerate living like this for however long I have left. This just isn’t gonna fly so good luck to all of you. I wish you the best. I’ll probably be on another thread I hope.
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Oh no! @spookiesmom! I am so sorry to see you go but we understand that is not worth living with terrible side effects. Sending the very best for you as we all continue in hope on finding the treatment that works on the long, long term! Good luck!
Welcome @seek to our very, very small group! Hopefully we get to hear from you often :)
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spookiesmom, I'm so sorry! I can't imagine. I'm (so far) still OK with SEs. Am hoping they can find an alternative for you…
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So my MO has me holding right now until my big D resolves and I can rehydrate. My creatinine was like 1.7(!) and I am trying hard to drink fluids but it’s hard. So I’m redoing blood on Monday. He’s also checking to see if the pharmacy has received their shipment of Truqap so I can go down to 320mg twice a day. If not, I’ll just do 200mg twice a day until the pills come in. I’ll also look into that supplement.
See-q: My MO says the pharmacy (at a DOD facility) has been able to order the Truqap. It’s now in their formulary. So it’s just a matter of time until it’s stocked.
So sorry spookiesmom! I hope you find a better treatment for you!
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@katyblu hate, hate, hate the big D!!! I am still struggling with it every now and then. I had (YET) another UTI and with the antibiotic they prescribed Florastor probiotic as well for diarrhea. I took the antibiotic, Truqap, and instead of Imodium, I took Florastor. It did regulate diarrhea and now that I am done with the antibiotic I may keep taking Florastor along with Truqap to see if that is better than Imodium for diarrhea. Keep up that water intake! Get jello or popsicles (you make make them yourself without all that sugar), ice chips, and obviously electrolytes drinks.
Have a great weekend ladies! Finally it is getting warmer in North Idaho!
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Well, Truqap failed me. The rash was getting intolerable, so MO dropped my dose to 160 mg. However, just as she was doing that, I had a PET scan which showed further progression. So much for the dose reduction and I'm feeling guilty over wasting this whole practically full bottle of drugs.
I don't know what's next. I'll see my MO on Wednesday. PET scan report said, "Interval development of omental caking/mesenteric carcinomatosis."
Am hoping the next line of treatment (my third) will work. I was on Ibrance for about 3 1/2 years, Truqap for five months.
Carol
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I am sorry to bring you bad news but thought you would want to know that Spookiesmom passed away Saturday night. Her DD and SIL were with her. I’ve been reading here because it would probably be my next treatment
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Oh, I’m so sorry to hear that. I was thinking about her…
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Very sorry to hear about Spookiesmom. I was mainly posting on the clinical trial site but it looks like Truqap is my next line (still waiting for pharmacy to send me pills). Thanks to all who shared their insight. May spookiesmom rest in peace
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Hello,
New here and stumbled upon this thread. Currently on Truqap, wanted to connect with those on same medication. I hope you are all well.
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I just started Truqap today after my first Fulvestrant shots last week.
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hello! Well, I am also moving on from Truqap, after 6 months, scans results came back mixed but significant enough that my oncologist decided to change so now I just starting Trodelvy.
Wishing you the best on Truqap!
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Hello everyone. I'm starting Truqap tomorrow and hoping for the best. Really appreciate reading about everyone's experiences and insight.
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This looks to be the most active board for Truqap.
In three days I will be starting Truqap. The specialty pharmacy called to confirm it all. 200mg 2 pills 2x/day. Four days on and three days off.
The pharmacist was very helpful and knowledgeable. She said the side effects usually don't bother people until a few weeks after starting. And most of the side effects are felt during the rest period. She said to make sure that I have everything at home that I might need, like immodium, nausea meds (I have three different prescriptions!), and talk to the doctor about having rash meds at home too. She said the rash may come but it should pass too if I can just bear with it. Test my blood sugar if I can and keep track. Again, they give the highest dose and then reduce dose from there if needed. I'm scared. I didn't have a great time with Verzenio but the side effects calmed down after three months. Too bad it didn't continue to zap the cancer.
Wish me luck.
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Dulcea -I’ve been talking Truqap since Feb 2023. Experienced rash early on, bad about 2 weeks. Oatmeal baths and OTC creams helped. Little diarrhea during first 3-4 months.
In May had radiation on my breast, treatment was intense and compressed to 3 weeks. Had minimal reaction (dermatitis) initially. Went to Europe for 3 weeks and my dermatitis went crazy. Had multiple side effects …uncontrollable diarrhea was just one of them. Traveling, going to pharmacies in EU didn’t help.
When I returned to US Onco doc took me off Truqap for almost 3 weeks. Diarrhea now under control, back on Truqap with a reduced dose 160x4x4, 3days off. PET CT in July was very positive, showed treatment plan is working.Having said all of that…I believe my previous extreme diarrhea, fatigue, dehydration, etc. was not caused by Truqap yet related to other factors so perhaps my experience is more of an exception?
Please stay in touch and let us know how you are doing!!
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@kat.mac thank you, thank you so much for responding and letting me know this can be tolerable.
I am not sure if your started it 2/23 or 2/24. I am assuming 2/24 since that is what is in your signature. That is still really good news. You are brave traveling to Europe on new meds! I hope I follow in your footsteps with little side effects. Do you think you will be staying on the lower dose or increasing again at some point?
I'm glad you responded to me because this board seems quiet. I hope its just because Truqap has only recently been approved. I will certainly keep posting.
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Yes started Feb 2024. Believe FDA approved use the end of 2023 then I spent a few weeks in January working w/insurance company to sort out issues.
Yes on reduced dosage. Truqap website recommends that too. Perhaps less is more?If you have time, and you haven’t done so, you may want to scan comments in this site to get a feel of how several of us did with the initial drug launch.
Take care!
Kat
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Hi Dulcea. This is my second week on Truqap and it hasn't been bad. I had a bout of nausea on my 3rd day (of my first week) but sucked on some ginger candy and ice chips and it was fine. I have Zofran but it messes with my GI so I try to avoid if possible. Just wanted to bring up a couple of suggestions I found on this board as well as another board (I believe on Verzenio) to try to help with diarrhea.
I started taking a good probiotic (bacteria count in the billions) before starting Truqap. I started with Bio-k (it's refrigerated). I take half a container in morning and half in evening. I later read on this board that someone started taking Florastor and it helped with diarrhea so I switched to that since it's plant based (Bio-k is dairy based). So far haven't had issues with D (fingers crossed). I also read on here to eat a little something before taking the pills so I've done that as well. I know it's early for me but really hoping these suggestions help in the long run. All the best to you and everyone else on this treatment
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@smallmoments thank you for the information. I have trouble with probiotics; diarrhea (yes, you read that right) and last time it affected my memory. I might go grab the Floristor though and try that. I just came off Verzenio with severe diarrhea issues so I really don't want to deal with that again. It took so much out of me. I should have invested in the Imodium company! Can I ask what happened with the RLY-2068? I was reading about that too. I wish you the best on Truqap. Along with me!
@kat.mac I have read as much as I can on Truqap, and there is nothing like reading about everyone else's experiences. I appreciate that people share their information.
I am going back to work in 3 weeks (elementary school) and that's about the time the side effects should hit, right? Why couldn't this cancer have waited until I was retired? Although, I will admit that work has been my sanity around this mess. It's good to think about something else.
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Hi Dulcea. Sorry to hear about issues with d on Verzenio. Hope it's easier on this treatment. I recently ended a clinical trial for RLY-2608. It's a targeted PIK3CA therapy that was quite easy (but I developed severe GERD in the last few months of the trial but was given meds to manage it). I was on it for 21 months which I'm very grateful for. Here's the link to the clinicaltrials.gov page: https://clinicaltrials.gov/study/NCT05216432
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Well that was an interesting “Welcome Package” that arrived today. I wasn’t sure what that water bottle was or what it was for. Looks like it belongs in a car engine or something. And I assume the Working Hands is for any rash that may develop. Here we go.
@smallmoments thanks for the info on the clinical trial. I will look into that soon. I did read a little bit about it.
RE: the Florastor. I had that probiotic in my cabinet because that one was supposed to help specifically with Verzenio. I thought it had affected my memory last time after just a few days but I am trying it again to see if it was that or something else. The memory issue did clear up after a while once I stopped it.
My Truqap adventure awaits….
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hi everyone, my mom just started on truqap and fulvestrant on 08/05. some background, initially diagnosed in may 2022 and all treatment completed in may 2023 . come march/april 2024, turns out the verzenio and tamoxifen wasn’t working. mets to skull, sternum, ribs, hip, knee. now she’s been placed on fulvestrant, truqap and zometa injection. reading through the comments here, it may be helpful to get her started on claritin, immodium and a nausea med? praying this treatment works with minimal SE. any other advice? i’m her primary caregiver along with a newborn and it is beating me down to the ground.
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Welcome to you — we're so sorry to hear of your mom's diagnosis. We're sure you'll get great recommendations and support here — we're all here for you both!
We'd encourage your mom to join one of our MBC Zoom Meetups where she can meet others in very similar situations to get their feedback and suggestions for managing side effects.
We know you'll get great help here too! Let us know how else we can assist. Welcome again!
—The Mods
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@moderators thank you, I will be sure to have her join next Monday.
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it is so helpful to read about everyone’s experiences with Truqap! I just started Truqap last week and am now on my second round. So far so good. I hesitated starting this medication because of fear of the side effects.
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Started my third round of Truqap today and noticed a slight rash forming on my arms and legs! Ugh! Hoping it doesn’t get any worse!
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Ugh… we're sorry for that, @eviee12! Rashes can be a common side effect of treatment, so it's important to keep an eye on it. In case it worsens or you have any concerns, contact your doctor. For now, here's some information on Managing a rash that you might find helpful.
Kind wishes to you,
The Mods
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@smallmoments @dulcea @eviee12 Thank you for sharing with us your experiences with Truqap. It made me happy to hear @smallmoments has been on it for six months now!
I'm on 3rd month on it and so far, as long as I take the medications that were prescribed to manage the side effects (mine are nausea, gastritis, diarrhea) prophylactically (45m prior), I find myself well tolerating it. I also found that eating "prior" to taking the Truqap pills help lessen gastric pain.
However, the newest side effect added to my list is hyperglycemia. Last week's labs put me on pre-diabetic range. My nutrition/diet is at baseline and I do best to watch sugar/ carbs intake. However, it appears Truqap could further heighten one's risk for elevated blood glucose even with less pre-disposition.
I am hopeful my lab numbers would improve by next month!
I wish this medication could help us maintain better quality of life for a long time. My MO reported that so far, with existing studies on it and it being fairly new, its average efficacy is six months. Let's pray for much longer effectiveness and more manageable side effects for everyone🙏
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