??? Questions about verzinio (abemaciclib).

[Usrcmc]

Hi everyone.

I am new to the site however I have been following postings for a while hoping to read about experiences with verzinio, a new drug for Her2-. It was just released in Oct. 2017 I think. It would be the equivilent of Ibrance for Her2+. It is a target agent. It is a daily pill, no IV infusion. I was on it as my hopeful majic bullet for my stage V disease. i was very sick with pneumonia and then a cellulitis infection in my lymphedemia arm and hospitalized 4 days a month ago. My dr.determined that the side effects of infections related to the drug were too high a price to just keep my tumor marker stable and that it would take 3 months to see if it could do anything for me. I have been devastated to be told that I will have only 3-6 months of life. I have a daughter in her first year of college and my husband died 5years ago from liver cancer that he had for 8 months.

To come back to the beginning, my first dcis was in 2001, lumpectomy, radiation. Second primary 2002, lumpectomy, radiation, chemo. I had 1lymph node positive out of 17, and it was a large one. I also had bilateral reduction done when I had my lumpectomy. Recovery and I thought I would be fine and go about our lives. Our daughter was 3 when this began and I could not take care of her so needed help. We missed out on a lot of bonding during this time and she did not view me as an authority figure. So this had a big impact on our lives and it took a while to find our new normal. Life goes on then my husband had a horrible diagnosis of liver cancer and everything went down each time we meet with drs. Chemo, work and keeping our lives normal was my husband’s story. He was in a lot of pain and they could never get ahead of it. 3 months after he passed I was diagnosed with stage V disease, not to my breasts, to my lung, liver,mediastinum , vertibrea, abdomen cavity. Fortunately, I had the same oncologist through all of the years. So, here we are 5 years of going from one drug to another with my treatment, now 10 or 11 different chemo., all except one worked for a bit of time. All had side effects, and now the new target agent is too much. My heart function was dumped from a specific drug which should have worked and disease progressed while I was on it. Fortunately my heart recovered.

So. here I am wondering if anyone has experience with this new drug and how it has been used successfully. Is there a lower dose. I took 1pill 2times a day. I can’t remember what the dose was, maybe 200. Has anyone used it with only slight diarrhea, the main side effect and without getting infections from low blood counts, etc. I believe this drug, like Ibrance, is being used as a first line treatment.

I look forward to hearing from someone who know the drug. I will say I am emotionally a bit looking for some reinforcement as it is difficult to stay strong when overwhelmed and lots to think about. I feel there is much to do and I may not be able to get it all done. I know I want to spend time with my daughter, and others

Looking forward to some exchange.

[TruthisGreat]

You may want to research this: bxprotocol.com/ I've heard great things and trying to decide myself between this and cryoablation (used by jimmy carter for his brain cancer). I've been given 1.1 years.....

[Zarimama]

If your white counts were low leading to infections, white counts can be raised with Turkey Tail mushroom capsules. They worked for me on Taxol, Adriamycin, Xeloda and now on Navelbine. If the abemaciclib was working for the tumors, then I would not stop it and ask the Dr. if you can stay on it and try and raise your white counts and lower your infection risk by using the mushrooms. I took 6 grams ( 12 capsules a day of the mushrooms) and my white counts never went down to where I missed a chemo dose. Also I never got an infection. There was a published study about the mushrooms with patients on Taxol that showed it works.

[PJBinMI]

Wow, you have really been thru alot! One thing I would strongly suggest is to see a bc specialist onc if you haven't already, at least for a second opinion. The top tier of Cancer Centers in the US are those designated "Comprehensive Cancer Center" and listed by state on the website of the National Cancer Institute. They have oncologists who specialize and both see patients and do research. I was able to get an appt with a bc specialist onc within about ten days of my onc calling and asking for one Insurance covered it except for usual office visit co pay amount. You daughter is at a vulnerable age! 19 year olds are famous for thinking their parents don't know a thing! I hope you and see both have alot of supportive people in your lives. You mentioned a couple of things that may be typos. Ibrance is for those who are dealing with bc that is E + and her2neu -. No stage V cancer, stage IV is high as it goes.

I hope you will find treatment options that will work well for you and keep you going for a long time yet. Sending warm thoughts and energy and prayers your way.

[Usrcmc in reply to PJBinMI]

Thanks for your response and corrections to my typos. I had replied at an earlier time but don’t know where or if I got it in the right way. I will see my onc this week and there will be more discussion.

[tmills64]

I take Astragalus Extract for white counts and Maitake Gold. There are so many things that can help with that. Don't give up get a second opinion! Prayers!!!