My husband, Dave, is Stage IV, dx in August 2013, and, of course, was told he has 8 months to live. He was accepted in the Phase III, three arm double blinded Nivo+ipi, nivo, ipi, and he had the first IV on November 1st 2013. The CT scan (Jan. 28) didn't bring us the good news we were hoping for. Just to keep it short, some tumours decreased, some tumours increased. No new tumours were seen. The preliminary report shows close to 20% progression in the tumour load. The biggest increase was noted on the liver tumour, and on the lungs nodules. Despite this, Dave feels great, energy levels are high, just like before the treatment started. All his blood tests are normal, including the liver enzymes. The LDH is 138 and it's been around this value since the beginning.
We are still part of the Trial, as Dr. strongly feels there is still a chance Dave can benefit from the trial. He is receiving an IV every two weeks, for the next six weeks, at what point he is getting scanned again.
My hopes are:
1. There were almost three weeks in between the base line scan and the start of the trial. There is a very good chance the tumours grew fast in this time frame and actually, although the numbers don't reflect it, his tumours are stable in size or even a little smaller.
2. He is a slow responder to medication, and maybe the treatment will kick in soon.
I kept track of all the side effects he had, and he had a lot. None of the side effects sent him to the hospital. The only drug he took was Reactine, 2/day, to deal with his skin rashes and itchiness.
At some point I was sure he is on the combo arm (nivo plus ipi). And then I thought he’s on nivo, and then on ipi only. To tell you the truth...I have no idea. I would almost prefer he was on nivo only, because that means ipi is still an option. But if he was on the combo arm or on ipi only, well, pd1 is not available for him as a follow up. He is BRaf positive (V600E).
We are very positive people, we are going to fight this with all it takes. We are not giving up, we have an amazing life and we have all the reasons in the world to fight our fight.
I don't know how other people deal with the reality of this disease, but I am not listening to motivational tapes, or read positive and uplifting messages from the internet. All I do in all my spare time is research, reading articles, links, blogs, fb, forums, all melanoma related.
I hope from the bottom of my heart the scan in 6 weeks will show either stable or a decrease in the tumour load.
But if there is progression, and he was on ipi, what Plan B, Plan C, and Plan D look like?
It seems the options would be:
• Tafinlar and MEK. That, of course if this gets approved as standard care for Braf positive patients.
- TIL, either at NIH, Moffit, or MD Anderson
- Vemurafenib (Zelboraf))
Now I need help from everybody involved in any of the above, or they know somebody that knows somebody: please, let me know
- Is there any other treatment option that in your opinion would work as well and I missed?
- what worked for you from the options listed above?
- based on what you know from your experience, or somebody else's, in what order would you do the treatments above?
Thank you very much for your patience and for your input. As I said, I hope everything is going to be ok, but I need to know the answers and the options to the what ifs, it's my way of dealing, it's what keeps me going. I have no prior experience with any kind of illness, I'm just doing what I can to take care of my man.
Also, english is my second language, please be kind with my grammar and choice of words.