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Anyone on TRUQAP?

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24

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  • spookiesmom
    spookiesmom Member Posts: 8,178
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    The meds FINALLY came today. Will start Monday. This was included in the box from the special pharmacy.


  • suef
    suef Member Posts: 3
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    Lucky you! Express-scripts has denied my prescription, so it looks like I'll have to put in an urgent appeal. Truqap doesn't appear in their list of included or excluded formularies. Ugh!

  • ohmysoul
    ohmysoul Member Posts: 23
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    spookiesmom, wow! look at all those goodies! Nice! I got nothing but the pills from my pharmacist! HA!

    suef, I am sorry that you have to wait to start the treatment, hope they approve it fast and that your hands and feet feel so much better. I have not see any difference on mine since I started with Truqap🙏 and hope it stays that way!

  • kat.mac
    kat.mac Member Posts: 5
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    Thanks for sharing comments about Truqap side effects as I start tomorrow and feel forewarned.

    Had to jump through hoops to get samples from drug rep while my prescription was under appeal process at FL Blue for the past 2 weeks. Apparently drug was approved by plan yet no pharmacy was identified to fill prescriptions. Thankfully I have a very persistent oncology RN, and a wonderful FL Blue patient advocate rep to shepherd this through the maze to source to Onco360. It’s a new pharmacy distribution channel for FL Blue and I’m hearing great things about their capabilities.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    That Onco360 specialty pharmacy is the same one that I’m going through my MO office must’ve done it I didn’t do it but anyway it came in. I just finished my first week on it and so far so good except I’m tired.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Finishing with week five! This last week I had to deal with itchy face and body! no rash this time but just crazy itch!!! It is getting better as I added Claritin to the other two I was already taking. I think it was my fault when I stopped taking the Zyrtec and Benadryl after the first itch/rash were gone. Aghhh!! My oncologist said that the Faslodex doesn't help either, ha! Anyways, also every time that the diarrhea wants to show its ugly face, I take the imodium! It is working so far!

    Have a great weekend!!! :)

  • sunshine99
    sunshine99 Member Posts: 2,699
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    I finished day four of cycle two yesterday, so today is an off day. No real SEs that I notice. Maybe a twinge, but who knows? @ohmysoul it's nice to have someone who is a few cycles ahead of me. Were you the one who mentioned a possible UTI during cycle 2?

    Carol

  • ohmysoul
    ohmysoul Member Posts: 23
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    Yes, week two was my most challenging one. I had an UTI, a very small mouth sore, diarrhea towards the end of the week as well as the beginning of an itchy rash on torso/neck, and fatigue. All of those side effects resolved fairly quick though. Hopefully you get nothing! :)

  • bluebirdlady
    bluebirdlady Member Posts: 3
    edited February 5
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    Does anyone know of any clinical trials for Truqap in Canada. My sister's dr does not want to try Piqray, as she has Chrohns.


    Thanks 🙏

  • aukerdeb
    aukerdeb Member Posts: 3
    edited February 5
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    I just started truqap today. I’ll see how I tolerate the new med.

  • ohmysoul
    ohmysoul Member Posts: 23
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    @bluebirdlady It might be good idea to check on ClinicalTrials.org for some of the information you are looking for. Also check NCT03660826, I believe they have one going in Toronto.

    Hope you find something going.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Holy crow! I just got a call from the pharmacy. They want a $3,389.45 co-pay. WHAT?????? Am working on a co-pay assistance program.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited February 9
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    Yep I heard that over $3000 co-pay too. My MO office apparently set me up with a pharmacy called Onco360 I don’t have a co-pay nothing the stuff is $22,000 a month and I’m not paying anything for it so call your mo they have people in the office that know about this And how to get you qualified I agree it’s totally ridiculous what they they charge and apparently this is not going through Humana so that won’t kick me into catastrophic this year

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Thank you, spookiesmom. What's interesting is that I got TWO bottles of the Truqap from two different pharmacies. I actually have enough for 13 more cycles, which will take me into May. If I end up with a big 3K+ copay, I'll talk to my MO's office and see if they can help. Our income was above the threshold, but with DH retiring, we're going to take a big hit to our income.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I’m just finishing week 2 of the lower dose. My glucose levels have gone crazy. Up to nearly 400. I am on an insulin pump fortunately. My Endo increased the bottles I can get, trying to get that filled has been a week long struggle. She also didn’t tell me how much to shoot, or what to do with these high numbers. In 20 years with diabetes I’ve never had numbers like this. Have talked with MO he wants me to do 2 am , 1 pm next week.

    But no diarrhea or other s/e thank goodness.

  • moderators
    moderators Posts: 8,287
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    Hang in there All!!! We're here for you!

  • moissy
    moissy Member Posts: 371
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    My blood sugar levels went over 400 as well and i am not diabetic. I ended up in the hospital due to kidney pain that may or may not not have been related to Truqap. I normally do not experience much in the way of side effects w chemos, but i got rash, elevated blood sugar, elevated creatinine, diarrhea and GI issues that have not yet resolved. My high blood sugar was only detected bc I went to ER with pain. I wasn’t due to be tested for blood sugar for another week. Was treated w insulin and I’m off Truqap for now. Blood sugar has returned to normal. No more insulin needed.

    AZandMe does have a patient assistance program that in some cases provides the drug for free based on income.

    On the bright side, it did bring my TM’s down, but not sure yet if they are putting me back on at lower dose once my kidneys heal.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Oh no! I am so sorry @ spookiesmom and @moissy!!!! Not great! Definitely the second and third week on this med are the most challenging since you start learning how to manage side effects.

    I am on my seventh week and still learning how to stay ahead of it all! But it does get better. I really hope it gets better for you!!! My blood sugar is elevated as well as my creatinine but still been able to continue, dealing with diarrhea has been also a challenge but I will experiment with taking half of inmodium pill the 4 days I'm on truqap and stop on my days off… I have been able to keep he rash controlled by taking benadryl at night and zyrtec in the mornings everyday. On days off I just take benadryl at night. I guess for me getting three UTI have been a little too much! My doctor has a plan so will see how that goes…agh!!!

    I just really hope it is working…!

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Wow, I guess I’ve been lucky with no SEs to speak of. I just finished cycle 4. Got a call from the specialty pharmacy and they want a $3,300 copay. Yikes. I actually have enough pills to last through May so I’ll try to figure something out. Will start Medicare Part B coverage next month. Am working on the supplements but this is the first time I’ve been asked to pay anything.

  • ohmysoul
    ohmysoul Member Posts: 23
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    @sunshine99 Have you tried Azpatientsupport.com ? I know they have plans so hopefully they can help.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    @ohmysoul I haven't. I'll look into that, though. We're meeting with our insurance woman on Tuesday to sign up for our Part B supplements. We'll have one month of overlap with DH's insurance and Medicare Part B.

  • aukerdeb
    aukerdeb Member Posts: 3
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    I started truqap 2weeks ago. I took for 4 days and off 3. On the next week cyclr, I didn’t take Truqap because I was getting SBRT on my bone Mets in my hip fir 5 treatments. . But I started a rash 5 days after my first dose. It’s a bad rash over my entire body, other than face and palms. It itched the first day but has been managed by pepsid, Zyrtec, and prednisone. It took a week to go away. I am done with my 5 SBRT treatments and started my 2nd round of Truqap today. I’m hoping for better outcomes with being on the drugs to compact the rash. Time will tell. The rash is like measles everywhere. I have had some slight loose stools, but not full blown diarrhea. I’ll stay in touch. Thus is just week 2 for me. I’m in Illinois but go to Froedtert in Milwaukee. I’m the first patient on truqap there.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Well, crap! I've been taking ONE tablet morning and evening and I'm supposed to be taking TWO! How did I miss that? Just messaged my MO and will up my dose to two tabs starting this evening. Sheesh. Maybe that's why I've had no SEs.

  • ohmysoul
    ohmysoul Member Posts: 23
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    @sunshine99! Ha! I was wondering how come you had enough to last you all the way until May with only two bottles! Glad you are now on schedule with a full dose and hopefully no SE!

    @aukerdeb Sorry about that rash, and glad that now you have it under control. I am on my 8th week and still taking either Allegra or Zyrtec in the morning and Benadryl at night. I DO NOT want to get that rash again! As far as diarrhea, I haven't have a full blown one, just a little that was easy to control with Imodium. I am the second patient taking Truqap in North idaho/Eastern Washington area.

  • kat.mac
    kat.mac Member Posts: 5
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    Hi. Just a quick update, completed round three on Truqap. Rash on legs was rough after second round and is much better now. Fasting glucose was slightly elevated, monitoring w/lab work w/daily fasting check on home test. Energy levels low when taking drug. Never was a nap person yet feels wonderful during those four days. SE on no-med days are minimal, energy returns++

    Kat

  • sunshine99
    sunshine99 Member Posts: 2,699
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    ive just signed up for Part D with Medicare through United Health Care/AARP. Waiting to see if the Truqap is covered.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    They probably will cover it but have your MO office check into patient assistance to cover the co-pay which is over $3000

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Maybe this is a good thing that I misunderstood the dosage. I do have enough to get me into March and will have Part D Medicare effective March 1. I'm not going to refill under my current insurance because I'd be paying the 3K twice. If I wait until March 1, then I'll just have ONE copay of 3Kplus, then no more out of pocket for the rest of the year. This whole Medicare thing is so confusing, but it looks like our total out of pocket will be less than with DH's insurance through work - even with the Part D and G supplements and our copay for Part B. I'm looking into dental coverage, and it looks like AARP has some good deals for vision.

  • moderators
    moderators Posts: 8,287
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    Hi all!

    We have been contacted by Rethink Breast Cancer with an interview request for Truqap users. Please see below for information how you can help Canadians (no matter where you live) get access to this important medicine by sharing your experiences. Thank you!

    Rethink Breast Cancer is a Canadian organization that does a lot of support and advocacy work for MBC, including helping improve access to new cancer treatments. Rethink would love to connect with anyone who has experience with taking Truqap for HR+, HER2-negative metastatic breast cancer. The Rethink team is providing input on behalf of the MBC community to the bureaucratic body in Canada that will be making a funding recommendation for this treatment to be publicly reimbursed in Canada. This involves bringing the voice of people with experience on the treatment to the submission. They are on a tight deadline and would truly appreciate even a quick conversation or email exchange over the next few days so that they can include some quotes about your experience in their report. If you are willing to share your experience, you can email Jenn@rethinkbreastcancer.com.

    —The Mods

  • ohmysoul
    ohmysoul Member Posts: 23
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    Oh my goodness!!! Now I am the one with problems with my insurance no wanting to cover Truqap! I have Blue Cross of Idaho and had been pre-approved (that is why I had 2 bottles of medication) and now they say that it is not in the list of medication because it is so new. My oncology doctor and staff have called a couple times with no avail and even tried to get me into the AstraZeneca financial help but I didn't qualify because apparently we make to much! So, I just called my insurance and told them that this is my last try on a medication after so many treatments since 2011! If it doesn't work my next course of action will have to be clinical trials. I only have one more week of this medication!!!! Ahhhhhh!!!! Anyways, they asked for another letter from my doctor stating that and hopefully, hopefully! they can try to do something about it…. so as you see, I am a little worried…praying, praying, praying!