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Anyone on TRUQAP?

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Hi all, it looks like I'm going to be starting TRUQAP soon as an alternative to Piqray. However, it looks like TRUQAP and Piqray both come with some pretty nasty side-effects. I was hoping T would be easier than P. From what I've read, it sounds like Imodium AD may become my newest friend. Yuck! I was hoping for an easier drug.

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  • moderators
    moderators Posts: 8,176
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    Hi @sunshine99 — thanks for starting this thread!

    As it's a recently approved medication, we aren't sure how many will be joining in here. But as it seems promising, hopefully others will be adding to the discussion soon.

    For more information, our page on Truqap might be informative:

    We hope this helps and that you keep us updated on your experience with this new treatment! We're anxious to hear how you do, and send good wishes for great success!

    —The Mods

  • sunshine99
    sunshine99 Member Posts: 2,644
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    Thank you, mods! I did read some of the info from AstraZeneca. It sounds similar to Piqray which doesn't sound like fun!

    At any rate, I won't start until I've completed radiation for the new mets. I'm hoping I can hold off until January. I want to travel for Christmas and don't want to be "tied down" with SEs.

    I'll be interested to see who else pops in here. (Sorry for the all caps, above. The letter I got had it both ways. I promise I wasn't yelling. haha)

  • sondraf
    sondraf Member Posts: 1,609
    edited December 2023
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    This is on my next treatment line list depending, so would love to hear how you get on. My MO is pretty bullish on this drug. The side effects list looks similar to the one for everolimus except for the rash and risk of hand and foot again.

  • katyblu
    katyblu Member Posts: 221
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    This is the treatment I should be starting soon. I just met with my MO today to discuss the way forward after 27 months on Ibrance/anastrozole. I have a lot of progression in my bones so it's just time. I have the PIK mutation but I DID NOT want to do piqray. It looks like that one guarantees diabetes, but the toxicity of truqap is much less. It's still a potential side effect, but it's a 17% chance vs 80%. My biggest worries are diarrhea and a rash. Well, and a million other things….

    Yay! We can be treatment buddies! I hope this works wonders for you!

    Katy

  • sunshine99
    sunshine99 Member Posts: 2,644
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    katy, I'm still waiting on insurance approval. They've also denied the radiation treatment, so that has to be cleared up since I can't start the Truqap until I've finished with the radiation. My MO did agree that the Piqray is pretty nasty. She added HA1C to my blood work and my first one came back at 5.1, so that's a good start. She mentioned that Truqap can raise your A1C, so she'll be monitoring that.

    Do you have a start date?

  • katyblu
    katyblu Member Posts: 221
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    No start date as of yet. My onc pharmacy doesn't have the drug available as of yet so my MO is working on that. It'll probably be mid-January as I also need radiation for some pain relief. Plus, I get another biopsy on Tuesday. I'll keep you posted!

  • sunshine99
    sunshine99 Member Posts: 2,644
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    I got a call from the specialty pharmacy (not sure which one) and they're sending my first course of pills to me. I should get them on Monday via FedEx or UPS. It's going to be the 200 mg size. I hope I can swallow it, as it looks like the size of the Ibrance. I can't start until radiation is finished and that's still in limbo.

    I have a $0 co-pay for the Truqap. I have a feeling that the pharmacy may change like it did with my Ibrance. If all goes "well" I will start radiation in January and then start the Truqap mid January. I'm thinking that a Monday thru Thursday schedule with Friday thru Sunday as my off days. Am not looking forward to this at all, but I want to get going.

  • sondraf
    sondraf Member Posts: 1,609
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    Whats the dosing schedule on this, is it 4 days on/3 off in a week?

  • sunshine99
    sunshine99 Member Posts: 2,644
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    @sondraf that is correct. I now have TWO bottles of the pills. One each from two different pharmacies. No idea why. I will call when I have more energy. I still have to hold off taking it until radiation is completed, but that is still pending…

    I'm thinking that taking weekends off may be easier, but I have no idea how this is going to work out.

  • katyblu
    katyblu Member Posts: 221
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    Well, I had my biopsy yesterday and I feel like I took sledgehammer to my left hip lol! I can move around today better than yesterday, but I'm still super sore. Hopefully they got enough material to check my hormone status. But then the bad news hit me today….. My MO called and said they cannot get the Truqap. Apparently, it is not available in DOD pharmacies and since it's so new it'll take a long time for CONGRESS to get it added to the DOD pharmacy. So, he offered me Piqray again, saying we should at least try it before moving on to chemo. I am devastated!!! I don't want to be diabetic on top of everything. I just don't know what to do. I'm about to go on a research bender and see what I can find out. I don't know if Tricare will give me a second opinion out in the civilian world. I need to figure that out. I'm just so upset….

  • cure-ious
    cure-ious Member Posts: 2,754
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    Katyblu, Is a clinical trial an option? There are a couple of trials with targeted therapies (LOXO-783 and RLY-2608) that have far fewer side effects. I also got some help adding Celebrex, which, like aspirin, inhibits PI3KCA mutations in breast and other cancers…

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7056575/

    https://www.nejm.org/doi/full/10.1056/nejmoa1207756

  • seeq
    seeq Member Posts: 1,108
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    @katyblu -

    Can you get your scrip filled through Express Scripts(maybe Accredo?). Even though it's not in the DOD formulary, I'd think it should be available via mail order. There's a monthly copay, but it's not ridiculously high.

  • katyblu
    katyblu Member Posts: 221
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    Thank you cure-ious and seeq, I appreciate the additional information. I don't think I can use Express Scripts, but I'll talk to my MO about it. He is putting in for a second opinion for me. And I'll definitely look into Celebrex! Thank you for the research!

    Tomorrow, 5 Jan, is my first day of treatment with Piqray and fulvestrant, so I'll see how that goes. But my doc called me today to give me the results of my recent biopsy. It seems that my hormone positive status might have changed to negative. My MO said that my estrogen markers had no internal controls but the external controls were "appropriately positive." He says this is an indeterminant result, but it could mean that I am triple negative. I'm currently freaking out in my weird way. I was actually in the airport when he called and when I turned to tell my husband I burst into tears, so that was fun…. We decided to keep on our current plan and scan in three months. If there are issues at that time, we will re-biopsy and re-evaluate. But I know there isn't a lot out there for triple negative. Sigh…. what a way to start the new year….

  • seeq
    seeq Member Posts: 1,108
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    Katyblu - is so frustrating when we think we're handling news all right, until we try to talk about it and our emotions rush to the front. I'm sorry your biopsy gave questionable results. It sounds like your doc isn't buying into it completely. I'm hoping for clear and good results on your next biopsy.

    Please let me know what you find out about Express Scripts. Tricare is my prescription provider, so I'm always interested to hear how they handle things.

  • moissy
    moissy Member Posts: 371
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    I'll be starting TruQap in two days. Hope you are all able to get through the insurance and radiation issues. You may already know that AstraZeneca also offers a patient assistance program.

  • sunshine99
    sunshine99 Member Posts: 2,644
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    I’ve now received two bottles of Truqap at no cost to me. Different pharmacies. I have no idea why. Am planning to start the week of the 15th.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Well, I saw my MO today looks like ibrance is done , and I’m on to this new one. Won’t be for a week or two. Im already diabetic on insulin pump. He did ask if I could handle any increased glucose. Don’t know much about this med, what are the known se? Had Steven’s Johnson from taxotere, not fun. I’ll be watching this thread, recognize some of you here.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Hello! I also just started with Truqap/Faslodex on Jan 2nd, 4 days pills/3 days off. So far so good! Nothing really to report as far as side effects. How is everybody doing on it?

  • sunshine99
    sunshine99 Member Posts: 2,644
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    ohmysould, no SEs??? That's amazing! I hope for the same when I start. It will probably be on the 22nd. I'd like to do a M-Th on, Friday-Sunday off. My weight is down a couple of pounds. I don't want to lose any more, but swallowing problems make it difficult.

    Can anyone comment on the size of the Truqap tablet compared with the Ibrance 100 tablet? I'm so afraid I'm not going to be able to swallow these. I haven't opened the bottle of the Truqap yet. I want to get the OK to start before I do.

    I did have my A1C checked and it was fine (5.1) but my blood glucose yesterday was 144. It's never been that high and I don't know what to think. Will ask my MO tomorrow.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Hello sunshine99!

    Well, I just started my second round after 3 days off and just felt my stomach a little "funny" but nothing really worth of any complain, I really hope it stays that way!

    The tablets are 10mm in comparison with ibrance which I believe are 15mm so they should be smaller. I am on a Tue-Fri on and Sat-Mon off.

    What did your MO say about your blood sugar? Hope you can start your treatment on time and it all goes well for you :)

  • sunshine99
    sunshine99 Member Posts: 2,644
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    ohmysoul, thank you for the info on the Truqap tablet size. I will ask my MO about the bloodwork. Hopefully it was just a temporary blip. Good luck with round 2!

    (((hugs)))

    Carol

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I got a call today from the pharmacy that will be handling this med for me. I’ve been approved my insurance is gonna cover it and there’s no co-pay. Yippee then the lady wanted to know all the meds I’m on other meds for whatever so I told her and then she said well I’m going to connect you to our pharmacist And she did and he was a nice young man and he ran all my meds looking for possible interactions, and one of my heart meds came up with a moderate risk and he said he would have to call my MO so I went off and took a nap and of course missed the MO call so I don’t know if he’s gonna not allow me to take it or take it under caution I’m kinda really bummed about it, but just be aware that this drug interaction thing is something they take apparently very seriously. I’ll keep you posted. The first time he called today he said he was gonna start me on a low-dose of one pill in the morning and one in the evening then the second week two pills in the morning and one in the evening and then the third week, two pills in the morning, and two in the evening. Oh, and to stay on top of the diarrhea.

  • sunshine99
    sunshine99 Member Posts: 2,644
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    Spookiesmom, that’s interesting dosing. I’ll start right off with one in the am and one in the pm. Am supposed to check my fasting blood glucose after two weeks. I’m afraid of the diarrhea, but will have Imodium on hand.

    Ill start on Monday the 22nd.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    So after a nervous night last night, I managed to get in touch with the MO this morning and apparently he talked to the pharmacist and they agreed that I can take a lesser milligram. I had that happen with ibrance too. But he wants me to start the same way one pill in the morning one in the afternoon for the first week then two pills in the morning one in the evening second week two pills in the morning two in the evening the third week I was so relieved after that, I sat there and cried I thought I wasn’t gonna be able to have it it will be shipped FedEx supposed to come tomorrow. It’s from a specialty pharmacy in New York. Hope they can get it on the plane to get it down here. It’s called Onco360’.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Spookiesmom, I agree that it is an interesting way to start your medication, let us know how it goes! I just started my third round and last weekend developed an itchy rash on my torso, thankfully it is going away slowly…

  • suef
    suef Member Posts: 3
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    I'm also going to be starting Truqap in the next few weeks. My mets are in my hip bone, lung, spine and now liver. A year ago I began treatment with Ibrance and a monthly injection of Xgeva (bone strengthener) and Faslodex (estrogen bloccker). My first PET scan after that showed it was working, but the follow up scan three months later showed the cancer progressing. My doctor took me off Faslodex and Ibrance and put me on Xeloda. After three months, it did nothing to stop the cancer and gave me the most unbearable hand and foot syndrome. My doctor took me off that and was about to start an Enhertu infusion, when she got the results of another test saying I have the PIK3CA gene mutation and now she's putting me back on Faslodex and Truqap. I'm waiting on approval for Truqap from my insurance, but already started the Faslodex.

    I'll be very interested to learn what side effects (hopefully none!) occur in my and your treatment.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Having the dose reduced screwed up the shipment so they had a rework everything they called to say that it was ready to go great the co-pays gonna be $3000 I nearly fell over. I told the guy that I was approved for zero co-pay. Oh well we better check on that, yeah please do because if it’s gonna be three grand I don’t want it so I’m still waiting to get the probably be here this week so ladies, I would suggest that if you’re insurance or somebody your MO‘s office or somewhere screws this up you better make darn sure that it’s gonna be covered

  • ohmysoul
    ohmysoul Member Posts: 23
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    Hi Suef!!! Wow!!! Enhertu! That infusion was very difficult for me and so glad that its behind me after 5 cycles on it after progression!!! I have also had Navelbine, Ibrace/Faslodex, Doxil, Abraxane, Gemcitabine, Eribulin, Docetaxel, Xeloda, with the last one being Enhertu. I am just finishing my third round of Truqap. The first round was great! On the second round I got an UTI and at the end, an itchy rash on my abdomen and neck. I have read that to stay ahead of the rash taking Zyrtec in the morning and Benadryl at night work for the first month which is what I am doing and the rash has resolved. I am also rinsing my mouth with a mix of salt, baking soda and water to prevent mouth sores. On the third round I got diarrhea so I am taking Imodium. So everything considered, not so bad at all after having so many side effects with all my previous treatments. I am hopping that the next round I will have nothing!!! HAHAHA

    Wishing no side effects for you :)

  • ohmysoul
    ohmysoul Member Posts: 23
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    Hello!!!

    Suef, wow! I was on Enhertu last for 5 cycles until stopped working, it was not fun at all for me! I have taken Perjeta, Herceptin, Aromasin, Navelbine, Ibrace, Fasoldex, Doxil, Abraxane, Gemcitabine, Halaven, Docetaxel, Xeloda, and lastly Enhertu. I think Truqap is my last chance before I have to move to clinical trials, I am really hoping it works! Now I am on my resting days after the third round. I have had a few side effects and so far have been manageable. After the first round I had no side effects other than my stomach feeling a little "funny" and a little bit of nausea. Second round, I got an UTI infection, aghhhh!!! a small mouth sore (it resolved quickly with a rinse of salt, baking soda and water), and at the end of that round an itchy rash! on my neck and torso. I started taking Zyrtec in the morning and Benadryl at night and it resolved as well. On this last round I got diarrhea…sooo I am taking Imodium. Now praying that round number four, I get nothing! HAHAHA

    Spookiesmom, WOW!!!! $3000??? Were they really expecting patients to pay that amount of money for every monthly bottle of pills???? That is insane!!!! They better check and get your zero copay as previously approved!

  • suef
    suef Member Posts: 3
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    Ohmysoul thank you for the info. I'm a little apprehensive about Truqap because I read that one of the side effects is hand/foot syndrome. I cannot/will not go through having my hands and feet torn up again. They're still not completely recovered after three and a half weeks off Xeloda, although I read that it could take 2 to 5 weeks until they're back to normal. That was the most painful side effect I have ever experienced. The skin on my hands was peeling off and it was raw and tender underneath. I couldn't do anything with my hands unless I had thick gloves on.

    I also had canker sores in my mouth, so I started rinsing a few times a day with half water half hydrogen peroxide which cleared that up. I'll get some Zyrtec and Benadryl to keep the rash away. I should be starting the Truqap soon, at least I hope so since I haven't been on any chemo meds that worked in several months.