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Anyone on TRUQAP?

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13

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  • kat.mac
    kat.mac Member Posts: 5
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    Oh my- I had similar issue with FL Blue

    I went to my local BC office and requested an override/deviation for approving Truqap through Onco 360.

    Face to face contact was extremely helpful for an ultimate resolution. At one point the first hurdle was resolved as med was approved by FL Blue yet no pharmacy was identified to fill prescription. The very nice FL Blue customer service rep was able to a request deviation to move forward.

    Yes, this was time consuming. It required 2 visits to the office and 2.5 hours of my time while BC rep made numerous calls on my behalf. The deviation took another 72 hours to approve/process. In addition the Onco 360 pharmacy rep was in the background requesting the same.

    I recognize not all BC coverage is replicated state to state. Perhaps if you file a deviation face to face it will make a difference?

    BTW- AS will cover your med if your insurance company covers part of the cost (currently billing insurance $22.2k for 4 weeks). Please read the AS website about requesting co-pay assistance. Assistance is NOT income based. It’s based on partial insurance participation.

    I hope this helps you get the medicine you need and deserve. 🫶

    Kat

  • moderators
    moderators Posts: 8,287
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    This is so stressful, @ohmysoul. So sorry to hear this. The concept of what is too much income is such a difficult thing when it comes to cancer treatment because so many of the drugs are such astronomical prices. It's a lot to expect most of the general population to be able to reasonably afford treatment, and other basic necessities. Keep us posted on what your insurance says. Fingers crossed that they manage to be swayed.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Thank you everybody for your suggestions and help, Kat! I will go to my local BC office tomorrow and request an override/deviation for approving Truqap through Onco 360.

    Will let you know what happens :)

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Yikes, this is scary. I’m switching to Medicare with Part D and Truqap is questionable, I’m guessing because it’s newly approved.

    My insurance agent is working on it.

    What a pain.

  • kat.mac
    kat.mac Member Posts: 5
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    If you are hitting a wall on Truqap coverage/cost. Suggest going to AZ website Below is a snip from their website

    https://www.myaccess360.com/

    “Who can apply?

    • Patients who are covered by commercial insurance and their insurance does not cover the full cost of their prescription
    • Residents of the United States or Puerto Rico 
    • Patients are ineligible if prescriptions are paid by any State or Federally funded programs,including but not limited to, Medicare Part B, Medicare Part D, Medicaid, Medigap, Veterans Affairs, Department of Defense, or TRICARE
    • Patients with a valid prescription to accompany the TRUQAP Co-pay Savings Program offer”

    Ask questions, ask for help, you deserve good advice and answers & NO doesn’t mean you can’t appeal!

    Kat

  • sunshine99
    sunshine99 Member Posts: 2,699
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    @kat.mac THANK YOU!

  • ohmysoul
    ohmysoul Member Posts: 23
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    Yes! Thank you !!! kat.mac

  • katyblu
    katyblu Member Posts: 221
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    Good afternoon everyone! Well, we worked through some loopholes and were able to get Truqap for me. I had to get a "second opinion" from Texas Oncology to get the meds. I don't have a co-pay, I guess because I am still active duty military. But I am nervous for when I retire in June. Hopefully the DoD will have added Truqap to their formulary by then. In the meantime, I am switching from Piqray to Truqap and hoping that I won't be struck with the hyperglycemia. I really appreciate hearing what y'all are experiencing as side effects and I will prepare as much as possible.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Still working on the insurance with Truqap. I don’t want to pay the 3k copay with DHs insurance and then pay it again with Medicare. It will work out, somehow.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Wow! It is so crazy how difficult it has been getting this medication! I finally got it approved! After me calling Blue Cross several times, submitting letters, and calling my oncologist office a few more times! I had to miss a couple days without it but now I am back on schedule! I just hope it is working, i will get scans done in a couple weeks and we will see where we are standing.

    @katyble So happy that you are moving from Piqray to Truqap and your side effects are not bad. I will say that to try to prevent the rash, I took in the morning Zyrtec and Benadryl at night. Also took Imodium with Trupaq in the morning for the four days and stopped on my days off. I think that finally I am staying on top of my SE.

  • katyblu
    katyblu Member Posts: 221
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    Good morning! Well, I took my first dose this morning and, just like the Piqrat, nausea hit me 2 hours later. Unlike the Pirate though, this nausea was intense and I ended up throwing up (TMI sorry!). Didn’t even have time for me to take my anti-nausea meds and have them work. Ugh, now I just feel gross and blah. Anyone else have that?

    Thanks Ohmysoul! I’ll add an allergy med to my regime. I need it anyway with how the weather is in Texas!

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Oh, katyblu, I'm sorry the Truqap hit you so hard. I've not had those SEs to that extent. Maybe a bit of stomach upset, but not to the point of vomiting. Yuck. That sucks.

    Carol

  • ohmysoul
    ohmysoul Member Posts: 23
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    Oh no!!! I didn't have the bad nausea and like sunshine99 just some of stomach discomfort but it was only during the first round. After that just the challenge of trying to manage diarrhea aghhh!!!!

    Get well soon!

  • katyblu
    katyblu Member Posts: 221
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    No worries! I felt kind of awful for about 2 hours and then I got hungry. I’m going to take a nausea pill when I take my second dose tonight. Hopefully that’ll mitigate any issues. Thank you ladies!

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    Last Monday I took all my morning meds, including the brown one 20 minutes later I was in the bathroom with diarrhea and try and real hard not to throw up took about a half an hour for everything to settle down and I just figured it was a one off so Monday this week the same thing happened again but it doesn’t happen during the rest of the four days so I said something to doc when I was in there this week he said take an anti-nausea pill about 30 minutes before I take the rest of everything else And I’m only on three brown pills a day and take one in the morning and two in the evening so come Monday. We’ll see how that works

    Was it oh my soul who had the rash from the pill what what did you do for it? Who did you call? Did it go away my whole torso it looks like prickly heat like babies used to get I put 5% lidocaine on it. It stops the itch, but it’s not going away. I’m tired of itching.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Oh! @spookiesmom!!! I am so sorry!!! I know! It is hard but it will get better!!! To avoid diarrhea take one Imodium along with the rest of your pills on Monday. Yes, I had the terrible itchy rash!!! When you get it, it takes a few days of suffering but it will go away eventually. I took Zyrtec, Claritin, and Benadryl. But also I had cortizone, Aveeno anti-itch concentrated lotion, and cold packs when I got desperate. I hope that your itching goes away fast!😩

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    I thought that’s what you said, but I am on so many prescription drugs, and a little afraid of a drug interaction with the Zyrtec and the Benadryl. I suppose I could go to the pharmacy and ask them to run up drug check. This is miserable I’ll be off of it now till Monday. I hope it gets better over the weekend.

  • katyblu
    katyblu Member Posts: 221
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    Oh spookiesmom, I am so sorry you have a rash! I start my second cycle tomorrow. I found that if I take an anti-nausea with my pills it helps. I haven’t considered if it is just the first dose of the week and I’m not sure I want to test that lol! It’s allergy season here in Texas so I’ve already added Claritin to my daily regime. Hopefully that’ll help with the rash part! Wish me luck ladies!

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    It hasn’t gotten better. I finally called my MO yesterday and I’m waiting for a call back. My daughter is an LPN, and she looked up in her drug book that it could be the falosadex causing the rash too. No blisters or bumps just this horrible intense itching I put lidocaine 5% on it and it does help to numb it up for a couple hours. You can get it on Amazon.


  • ohmysoul
    ohmysoul Member Posts: 23
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    Oh my goodness! Yes, that rash is terrible!!! and it can drive you to insanity!!! I hope that your MO has an answer for you…let us know. Get better!!!

  • katyblu
    katyblu Member Posts: 221
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    So I’m on day 4 of week 2 and the rash has hit me. It doesn’t itch as of yet but it’s spreading across my body. I’m going to take some Benadryl tonight to see if that helps. And I did find out that I have nausea at each dose. I had to take my secondary nausea meds to make through 2 doses. Ugh, I’m not happy about this. Thanks for the heads up on the lidocaine cream, I may order that.

    All the luck, ladies!

  • kat.mac
    kat.mac Member Posts: 5
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    Hi all….please consider hang in there if you can with the bad rash and SE from Truqap treatment.

    I tried oatmeal baths, prescription anti itch cream, OTC allergy pills and sleeping pills during the first two rounds. Couldn’t sleep w/all that itching going on and lack of good sleep was nerve racking. By the third rotation body rash became less severe and wearing 100% cotton or linen clothes helped.

    As of today on my 5th rotation, with no rash. Still taking anti diarrhea and allergy meds during 4-day cycle. Energy level is back and feeling very good.

    I can also tell meds are working as breast tissue is much softer, lymph nodes less tender, etc. Expect next PET CT to confirm same.

    I hope this is encouraging to anyone experiencing nasty SE and considering treatment options.

  • ohmysoul
    ohmysoul Member Posts: 23
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    I got nausea on the first 3 weeks of Truqap, but now is gone. The rash appeared at the end of week 1 and stayed until middle of week 3 then I stopped taking antihistamines and it came back with vengeance!!! It was miserable, constant itch all over including my face and no sleep!!! I went back to zyrtec, claritin and benadryl until it was gone by the middle of week 5. I am on week 11 now and feeling so much better! So hang in there everybody!!!!

    @kat.mac so happy you are feeling good, yey!!!

  • katyblu
    katyblu Member Posts: 221
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    All, I had a rash for all of week 2 but it resolved after 5 days. My MO had me hold off on week 3 until everything resolved. So I started week 3 on a Sat rather than a Tues. I am finishing week 4 and no rash at all. But my nausea is insane at times. My first dose on week3 had me throwing up all day. And then yesterday I threw up after my first dose of the day. I think I’ve figured it out though. I need to have food in my stomach AND take my nausea meds at the same time. It worked today!

    So everything seems to be okay. I have a PET/CT on the 15th because I had some pain. So we’ll see how things are going. Not a lot of weeks down yet.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    thanks ladies you made me feel better. Sounds like maybe the rash won’t come back was at MO yesterday and he really didn’t answer me. If the rash would come back I’m still a little itchy and I’ve been off true for about three weeks now my skin is flaking. I look like a blizzard. It just falls off lotion doesn’t help so he dropped my dose again, I’m going to do one in the morning and one in the evening and I guess if my numbers keep dropping in the rash doesn’t come back I’ll stay on it I told him I didn’t want to quit the drug because it is working he said to my daughter I’d probably get 6 to 9 months on it and then I don’t know what after that but if this rash goes away and doesn’t come back, I’ll be one very happy camper

    Has anybody lost their appetite I don’t mean from nausea I mean just the thought of food is revolting. I think I went 10 days and between my dog and my cat they probably ate more than I did and I lost 6 pounds. No nausea no vomiting just food. Disgusting.

  • ohmysoul
    ohmysoul Member Posts: 23
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    Hello ladies!!! So glad to hear how you are doing. On my personal experience the rash resolved by week 6 and has not come back! So happy about that! I hope yours resolves soon! I have had very little nausea every now and then but never got to the point of throwing up. Hopefully you have found a way to keep it a bay by eating before taking your meds.

    There are some days that I am not hungry or nothing sounds good to eat but lately I do get hungry.

    Now I am on my week 14th! My CA27-29 went down to 66.9! wow! Last week I got my scans and came back with mix results. A lot of my mets were either no change or smaller but the ones on my neck did grow. My oncologist decided to stay on Truqap and keep an eye on the neck ones.

    This is probably my last line of treatment after going through 13 already, my oncologist did recommend looking into clinical trials so I made an appointment at MD Anderson for a second opinion and to check what kind of trials they have going. Will let you know how that goes.

    Have a great beginning of spring! Here in North Idaho is still cold….so I am looking forward to feel some warm down in Houston!

  • sunshine99
    sunshine99 Member Posts: 2,699
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    I'll see my MO today. Some of the tumors appear to be shrinking, but my CEA is continuing to climb. I have a list of questions for her. I'm going to continue to be the squeaky wheel.

  • katyblu
    katyblu Member Posts: 221
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    Good morning ladies! I am on the end of week5. No rash, working on nausea. My biggest complaint now is the big D. I don’t want to be gross but I have pooped myself twice in the last month, both times in bed. This is awful and it’s hard to get under control. I’m hoping to kept it at bay with Imodium but I seem to have to take a lot of it. If it keeps on, I don’t know if I can stay on this med. Sigh…

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Oh, katyblu, I'm so sorry about the big D. Are you taking anything to help with it? That sounds awful!

  • katyblu
    katyblu Member Posts: 221
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    I’m taking Imodium, but it takes a bit to dial in the amount. It’s just so embarrassing! I feel gross ☹️ Thankfully my husband is understanding. And we can joke about it later.