Brain melanoma

In July of 2017 my wife was diagnosed with two melanoma brain mets. One was removed via surgery then she had gamma knife on the other as well as on the area around where the tumor was removed. She then started Opdivo + Yervoy, did four doses of the combo then two years of Opdivo alone. She is now NED (no evidence of disease). Her side effects were very minimal – dry mouth, some rash, minor stomach issues.

She sees Dr. Hamid at Angeles Clinic. Be sure you have an oncologist who specializes in melanoma.

Sorry for your need to be here and what you are dealing with, Laura – but, welcome! There are many here who have done some version of what you are facing. I had melanoma lung and brain mets in 2010. After surgery to my lung and SRS to the brain I started a trial of Opdivo (this was before the combo was a thing!!!). I was given my last dose of Opdivo in June of 2013 and remain NED for melanoma ever since with no further treatment.

While there are those like me who do well with Opdivo as a single agent, the statistics show that treating folks like us with the Opdivo/Yervoy (often called the ipi/nivo combo on this forum) combo gets a much better result. If you are interested in a zillion reports on treatments for brain mets, here you go: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets&max-results=20&by-date=true Basically, they all confirm that your docs have you on the right track. Still, I would echo what Doragsda mentioned – make sure you are being seen by a melanoma specialist.

This primer I put together on current melanoma treatments generally may give you some information on what to expect and how treatments work: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

Finally, side effects vary a great deal from one patient to another. Fatigue, joint pains, and rashes are pretty much expected. More serious side effects that lead to inflammation in the lungs (pneumonitis) and the gut (colitis) as well as adverse effects to the endocrine glands can happen. However, we have learned a lot about how to deal with them. Still, that is a big reason why seeing a doc who is well versed in managing patients on immunotherapy is very important. Should you develop any symptoms that are new to you, be sure to report them to your doc. The faster side effects are noted and dealt with the better. Here is a report a made about the expected side effects and why they happen. While it is written to address Opdivo specifically, the side effects to Keytruda, Opdivo and Yervoy are all of the same sort, though as I previously noted, they can vary a great deal per patient and we know that they are more common with Yervoy as a single agent and when it is combined with other therapies – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

Hope this helps. Ask more questions as you have the need. There are many smart caring peeps on this board. I wish you my best. Celeste

It sounds like the treatment you are being offered is pretty standard of care. My brain met was discovered as a result of follow up care for my “real” brain tumor. Prior to that I didn’t know the cancer had metastasized. I also have a sprinkling of other mets. I had surgery, radiation, four doses of combo, and I am on Opdivo alone now. I’ve has various side effects but pretty minimal. I have more side effects from the multiple brain surgeries. No symptoms from cancer.

Hey hi there Laura
I am having my 3rd or 4 infusions on Wednesday. (I had brain met that was zapped on March 20th with gamma knife). My last infusion will be Jujly 16th. Then I will be taking NIVO on its own for 1 to 2 years.
I have no Thyroid so am already on Synthroid. Make sure they are checking your T4 and T3 and TSH all the time. Endocrine issues happen on this combo. Also I put myself on a strict diet. No dairy, ( I am a pescatarian) I also put myself on a preventative colitis diet and also stopped drinking my Chardonnay- any alcohol because I have a very sensitve tummy. Ive read other people do this and it really helps. I am trying to avoid colitis at all costs. Those are the biggies these combo drugs can cause. But those I am more sensitive to. Look at the adverse side affects and their symptoms. Just be on top of it all the time.
You can do this.

All my very best ,

Tracey from Toronto, Canada

I did have to get a sleeping pill as man oh man this stuff keeps me up all night long even though I feel exhausted!!!! So werid.