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Anyone on TRUQAP?

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  • seeq
    seeq Member Posts: 1,129
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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.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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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.

  • ohmysoul
    ohmysoul Member Posts: 23
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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 :)

  • sunshine99
    sunshine99 Member Posts: 2,699
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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…

  • katyblu
    katyblu Member Posts: 221
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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!

  • ohmysoul
    ohmysoul Member Posts: 23
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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!

  • sunshine99
    sunshine99 Member Posts: 2,699
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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

  • wren44
    wren44 Member Posts: 7,907
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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

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Oh, I’m so sorry to hear that. I was thinking about her…