MRI results

Good luck Tyais – I am sure many have read your post but could not reply, would need more info.
I think only your regular doctor can help you go through the options, and what is meant a significant increase in size (i hope they are still not too large despite this)
then I dont know where you are on having tried ipi/nivo and, if so, then can you go for trials instead?

I hope you have a good doctor (melanoma specialist) and that s/he will have options. Sorry you have to wait for this though
good luck Mark

Hello. Sorry to hear about the increase in size. As far as what to do next, it all depends on where else it is, what was done up until now. Are you going to one of the major research centers like MD Anderson or Sloan-Kettering? If you’re not that would be my next move if it were me.

Hi HappyGal, good lord sister! I read your bio and youve been BUSY fightin these damn brain, liver and armpit (lymphnodes) Hat off to you doing the WBR! Im upset to learn the lesions are still there, Ipi/nivo is a great combo med, i forget, are you still doing the Nivo? I think you may have stopped…Read my latest bio in my profile , im “kinda” at the halfway to End point of very little meds i have at my dispose, could I throw the idea of IL-2 Proleukin (Also an Immunal Therapy) your way? My team Is talking IL2 but ill know more the 15th (Aug).
There is other chemo type stuff i was offered early last year (like March 2018) after 7 infusions of Pembrolizumab (Keytruda) failed to work for me, these Meds where called
Dacarbazine, Paclitaxel and Carboplatin, a weekly mens Cancer meeting i go to, a guy went through the Carboplatin and said it was tolerable, but he has Non Small Cell Lung cancer, but Carbo is also for Melanoma…
You may be feeling like myself, like What Now? All my latest treatments where stopped due to disease progression…
Can i let you (and everyone else here) in on a secret? I use to work at Folsom State Prison (the Newer prison) to! Yep, no bullcrap! But, i was on the other side, the locked up side haha…im good though!, been a good guy now since 2001, been COMPLETELY sober since 2007, and then 2008 i was diagnosed with Melanoma at stage 3A…Life is great though, Fighting Melanoma is my hobby, keeps me out of trouble…

Hey Tyais,

It is very normal to have some edema and necrosis (dead tissue) around tumors that have been radiated – anywhere really, but certainly in the brain. Sadly, increasing size of tumors can also mean progression. Your docs should be able to look at your films and advise you which of these conditions they feel you are facing. So, I would call and ask them about which of those circumstances they feel you are dealing with.

As far as what to do next –

I think additional tumor testing is super important for melanoma patients not responding to current standard therapy, in order to look for “weird mutations”. Here is a trial that has been ongoing: https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match Some melanoma patients, especially those who have not responded to current therapies have found success this way. For instance Maureen’s husband (on this board) is doing well being treated with a drug typically used for HER-2 breast cancer. https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma…

Then there are these options as they came out of ASCO this year: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-st… Other trials are out there as well.

And IL-2 is another real option. TIL is out there as well.

Hang in there. I can only imagine how difficult that is, but you are amazing!! Celeste