Beth

I just had this exact conversation with my oncologist today because I’ve had similar results.  I had a high in February of 268 then back to normal until it jumped to 274 this week.  I had scans 4 weeks ago that did not indicate anything to be concerned about.  My doctor reminded me that this a very non-specific test and as Cindy said can indicate inflammation anywhere in the body.  She was not concerned about it but we agreed to have new labs done in 2 weeks to make sure it’s trending in the right direction and for my own peace of mind.

Best of luck!

Hi Jenny

I am not an expert on the various treatment options but I can share my experience with brain mets.  I was originally diagnosed in 2017 with a mole in my right thigh which was removed and everything was clear.  In January of 2020 we discovered the melanoma had returned and spread to my brain, lung and abdomen with multiple brain mets (7 I think).  I was starting to show mild symptoms when we found that the melanoma had returned; dizziness, nausea and one instance of almost passing out from the swelling around my brain. I had a craniotomy to remove the most threatening of the lesions.  After the surgery I had 3 rounds of combo ipi/nivo which I responded well to but like your husband I had to stop due to toxicity.  I had 2 rounds of nivo but stopped that due to pancreatic inflammation.  We decided to hold off on further immunotherapy last spring because everything had stabilized.  I am currently on targeted therapy (BRAF+) which I started in November due to enlarged lymph nodes in my chest which showed melanoma when biopsied.

I second Ted’s recommendation to find a melanoma specialist who is familiar with all the various treatment options.  I would also suggest getting a second opinion to make sure you are comfortable with what your team is recommending.  I spoke to two different teams (including neurosurgeons) that specialize in melanoma and treatment of brain mets before deciding on a course of treatment.

Sending best wishes to you and your husband as you navigate this.

Beth

Hi Daisy

I know you’ve already received several great responses but I thought I’d share mine as well since everyone’s is a little different.  After a craniotomy last year I did 3 rounds of ipi/nivo then 2 rounds of nivo.  My immunotherapy was stopped due to toxicity and we didn’t resume because everything had stabilized.  Fall of last year we saw what looked like progression and I started on Braftovi & Mektovi in November.  I haven’t really had any noticeable issues.  We did reduce my dose in the beginning because my liver enzymes were elevated.  However I’ve been able to slowly increase and I’m back to full dosage.  I do have some hair thinning but that started long before I was on the Braf/Mek.

I am somewhat fatigued but I also have a 2 year old and I think he might have more to do with it than the meds.  🙂   I work full time (desk job not physically demanding) and I’m able to spend a lot of time playing with my son, walking my dog, doing yard work, etc…  I’ve also just started to get back to working out.  I have some minor joint pain but nothing that isn’t manageable.

Hope that helps!