Verenzio

[Selmac]

Anybody on Verenzio. If so, how are you doing?

[Barb5]

I’m on Verzinio don’t know if that’s what you ment if so I hard a hard time the first month with bad stomach pains and constipated diarrhea once I went to the bathroom the pain went away also vomiting but doctor gave prescription it’s pretty much Imodium and I take as soon as I have first pain and loose bowel movement and it goes away I learned what I could eat on it and take meds at first sign of diarrhea so I now know how to quickly combat side effects and am happy taking Verzinio I also get Faslodex injections and injection for bones monthly I feel it’s a treatment I can handle hate the Faslodex injections tho but I’m comfortable with this treatment in comparison to others

[Selmac in reply to Barb5]

Thank you so much for the response. I knew I spelled it wrong after my post but didn't know how to correct it. I'm to start it on Thursday if all symptoms of what I was on go away. If not, I have to wait another week. They're also doing gene testing on me and if it comes back with a certain mutation, they will put me on Piqray. Hope I spelled that correctly. We moved where we're at now last October and my new Oncologist here was definitely not up to par on anything. He's also the top rated Oncologist here. So I called my old Oncologist and he actually did a video chat with me. I told him my thoughts on changing and where I was thinking about going and he totally approved. When I contacted them they actually had several people setting everything up. I'm with an Oncologist that strictly deals with breast cancer. The pharmacy is awesome and they tried everything to get my portion paid for but we're not below the poverty level. Even though it would take my husband's entire pension check to pay for it. I didn't know what to do. She said not to worry, the university was picking up the tab. An answer to prayer.

May I ask if you have lost your hair? I've been on Afinitor and Aromasin for 2 and 1/2 years and have very thick hair now. It got much thicker on this combo, maybe because it's drier it seems so thick. Thanks again. I'll keep you in my prayers.

[Barb5 in reply to Selmac]

Happy to say no I didn’t loose my hair but it did thin out also I have always had poker straight hair and it got curly which I’m happy it’s so easy to do now! At first I was getting upset because it was shedding a lot then I trimmed it a fit and it got curly. Glad your Verzinio will be paid mine is too it’s over $12,000 a month!! I don’t know how they can justify that price and get away with it and I also get Faslodex shots monthly don’t know how much that is I can just imagine and xgeva shot monthly. If you get the stomach pain and diarrhea a little nauseous have your Dr order you something for it it does help I don’t get it as often now and now I know how to handle it and don’t mind being on it. Wish you luck let me know how you make out you may have no side effects.🙏

[kearnan in reply to Barb5]

again in Us I have dual coverage of Medicare and then full medicaid so whatever Medicare does not pay Medicaid does. Verzenio costs about $13,000 a month in US. But there was a brief three month period where I was waiting to get approved for dual coverage. I already had Medicare but not full Medicaid (they stopped that once I became eligible for Medicare). Medicare expected me to pay a copayment of $3,000 a month LOL.

I contacted the company that makes it Lilly and it turned out if I had Medicare (and with Medicare you have to pick an RX plan which WAS (not anymore) costing me $40 a month.)

Turns out that if I had Medicare and medicare rx plan which I did, they said they could give it to me for a year for free. I filled out a one page form and sent it to my onco to sign and within a week I had it. I told them I would only need for about three months and once approved to get dual coverage, I called them and told them I didn't need it free anymore.

You should try it although not sure how NHS works with that. I prefer not having NHS only because we can easily switch doctors, oncos, cancer centers, go for second treatments all without prior approval. But now, here in US in NY, I not only do not pay a penny for anything, Medicaid also gives me free private car service to and from all doctor appointments (and not just cancer related) which is a godsend since I do not drive and have nobody to drive me. So that is a blessing the free car service. I am signed onto a website and I preorder my car online and get a confirmation number.

The cars are spotless and now with the pandemic they put up a Lucite partition and I used to have to sign an ipad but now they just ask for my DOB.

[Selmac in reply to kearnan]

Kearnan, thank you for the info. We do not qualify for medicaid because we aren't below the poverty level. But the cancer university that I am going to understands that my share would c take my husband's entire social security and some of his pension. They are actually picking up my share of the cost. I think thats great.

[kearnan in reply to Selmac]

No you spelled it correctly. If in the US. it is spelled Verzenio.

[Sweeten_1]

Started in March and doing well. Tumor markers went down to 18. CT sc

[Sweeten_1]

Started verzenio in March and markers went down to 18 and scans good. Diarrhea cleared up and better than stomach pain when xeloda stopped working.

[CincinnatiExperience]

Greetings,

I have been on Verzinio since last July (150 mg twice a day). At first the stomach issues were pretty serious (daily diarrhea, but I took the meds recommended and that took care of it every time). That cleared up about 6-7 months out. Now, it is going after my hair, nails, and skin. I have terrible neuropathy. Recently, I began treating that with topical Hemp Oil and it really helps quite a bit. My hair thinned, but seems to have stopped doing that. It is just no longer growing. Oh well, saves on hair cuts. I am upset about my nails. They do not grow either. I try to be really careful and not pick at them. Some weeks I am better than others. I just consider this to be the new normal.

Anne (in Cincinnati)

[Selmac in reply to CincinnatiExperience]

Thank you. I had the nail problem on Afinitor. One of my toenails actually came off. But I felt so good on it I wasn't going to complain.

[kearnan]

I was on Ibrance first. Hated it, hated it, hated it. Week off was scary sick. Then got an infection, had to have surgery, took four months to recover....UGH...Now on Verzenio. First, she tried me on the 150 mgs. (I stopped myself after a week, I could not leave the bathroom), then she lowered me to 100 mgs. (again I stopped after a week) I had stomach pain and non-stop diarrhea and finally she said this is the lowest dose 50 mg. and that was the key.

I no longer have the severe diarrhea, I no longer have to take naps, no stomach pain. I love the Verzenio but at the lowest dose possible. I also get falsodex injections and xceva(?) injection. But I feel so much more normal on the lowest dose of Verzenio.