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.