My choice was the Ipi (what we call it) Even though only 20% of Melanoma patients respond to this treatment, the people it works in, it works really really well and puts them in remission for a long time. With other treatments Melanoma tumors will shrink but will eventually start growing again and new tumors will grow. So since my tumors are still small and not life threatening I decided to go with the Ipi. This is not an FDA approved drug, so I had to enter a trial. The trial is twelve weeks, four infusions every three weeks. After the twelve weeks I get more scans done and find out if the treatment worked. It is very nerve racking not knowing but I am prepared with my next steps.
I am half way done. This treatment is nothing compared to the Biochemo. It is done in the doctors office and only takes about three hours. So far I have not had any side effects. I have six more weeks and then I get to find out if it is working.
Hi Mandy,
ReplyDeleteThanks for your update. Could you do the braf along with the Ipi? I have been wondering how you are doing. As for me, I have had 2 eye surgeries recently. Dr. Minor suggested I go to the Wills Eye Hospital in Philadelphia where they are considered the best in the world. The fact that I keep getting the eye pigmentation on a continuous basis is alarming. I need to go where there is cutting edge treatment. What you have proven is that you have to go the way it is best for YOU.
The fact that I test negative for the common melanoma mutations means that if I was to metastasize again, the only option would be Ipi, because it's broad spectrum. It's truly unnerving to know there is 1 treatment option!
On August 29th I will leave for Philly, and if they need to be as aggressive as possible and maybe take my eye, then that's what I need to do. I am so scared that this will go to my lymph nodes and elsewhere like it did before.
Wish me luck, I know I need to do this!
If you are in Danville, let me know, I would love to get together again.
Your blog is a great idea!!
<3 Sue