mary1233

Hello Anne – There is a Facebook page called Mucosal Melanoma Warriers and I know that there are people there with Vulvar Melanoma. Give them a try.

My best to you and your mother.

Mary

It sounds like both you and your husband are having to deal with more than any of us should ever have to deal with, I had to be treated for anxiety and depression after my diagnosis – the medication did not make them go away but it made it better for me. This was not due to Opdivo because I had chemotherapy.

My best to you.

Mary

 

Hello Celeste- You are such a light of hope to so many frightened people on this site.

I just want to share my experience with adjuvant chemo. I was diagnosed six years ago with mucosal melanoma that, like you, was able to be completely removed. They gave me a chemo combo for those "invisible" traces and because recurrence was common. The chemo was based on a single trial of fewer than 100 people in China and the oncologist actually said that they had no idea if it worked or not – it was just something that some doctors were trying without scientific proof. But it was really good for me because I was fighting the cancer instead of sitting back and hoping for the best. And although no one can prove it, it may have something to do with me being NED still.

My best to you.

Mary

I am not an expert so please verify everthing I say before you make a decision.

 

My concern with Medicare is with the Advantage plans. In my area there are no Medicare Advantage plans that have any of the major cancer centers in their network. So, under an Advantage plan, I could get immunotherapy, but I would be paying out of network fees for the doctors I would want to see.

You can get Medicare options that will pay for these types of doctors, but it is not cheap and it is complicated. Also it keep changing so you have to keep up with it.

When I get to the point where I have to set this up I plan to go the the Office of the Ageing to have someone help me understand the options. I am in NY State but maybe there is something similar in your state. You can call Medicare and talk with someone also.  Just don't take advice from an someone who gets paid by selling you insurance. Get your advice from someone who puts your needs first.

My best to you and your husband.

Mary

My understanding of immunotherapy is that it is for people who want their immune system to recognize and attack the cancer so that it can be eliminated from their body. I am also a mucosal melanoma patient, but when I got my treatment four years ago my only access to immunotherapy would have been through a clinical trial. My oncologist wanted me to have it surgically removed and try chemotherapy first. Now I am being monitored for recurrence, and I cannot tell you how comforting it is to me to know that there is something (immunotherapy) waiting in the wings for me to try should it come back. 

My advice to you, and the only advice I ever give, is to make sure you are being seen at a major cancer center. Someone here the other day said it better. Mucosal melanoma is rare and oncologists who have success in treating it are even more rare. 

Best wishes.

Mary

Sorry for your diagnosis.

 

I was diagnosed four years ago with vaginal mucosal melanoma with local lymph node involvement. The treatment plan offered to me at Sloan Kettering was the cisplatin/temozolomide – like you I was facing the high chance that it would come back. It has not. I was told that it was considered to be an aggressive treatment which was what I wanted.

I have been told, however, if it does recur, I will be looking at immunotherapy.

Best wishes to you. Let us know what you decide.

Mary

 

Sorry for your diagnosis.

 

I was diagnosed four years ago with vaginal mucosal melanoma with local lymph node involvement. The treatment plan offered to me at Sloan Kettering was the cisplatin/temozolomide – like you I was facing the high chance that it would come back. It has not. I was told that it was considered to be an aggressive treatment which was what I wanted.

I have been told, however, if it does recur, I will be looking at immunotherapy.

Best wishes to you. Let us know what you decide.

Mary

 

Sorry for your diagnosis.

 

I was diagnosed four years ago with vaginal mucosal melanoma with local lymph node involvement. The treatment plan offered to me at Sloan Kettering was the cisplatin/temozolomide – like you I was facing the high chance that it would come back. It has not. I was told that it was considered to be an aggressive treatment which was what I wanted.

I have been told, however, if it does recur, I will be looking at immunotherapy.

Best wishes to you. Let us know what you decide.

Mary

 

What struck me about this article, as one who someday may be facing this treatment, is what a debt of gratitude we owe, not only to the trial participants, but also to current patients. 

Mary

What struck me about this article, as one who someday may be facing this treatment, is what a debt of gratitude we owe, not only to the trial participants, but also to current patients. 

Mary

What struck me about this article, as one who someday may be facing this treatment, is what a debt of gratitude we owe, not only to the trial participants, but also to current patients. 

Mary

From my experience with a mucosal melanoma lesion in the vagina, the only definitive way to diagnose is with a biopsy.

My best to you.
Mary

MRF – I find these threads very upsetting. There are people using this site who are literally fighting for their lives.

As someone who knows the intense anxiety and fear of this disease, I implore you to regard these conspiracy theories for what they are – an opportunity to get fake passports.

Gene can find other avenues for his views. Patients and caregivers are coming here for science.

Mary

The Texas Health and Human Services website says that this department assists in navigating Medicare and Medicaid.

Mary

Something to consider – the ipi part of the combination therapy is the one with the more severe side effects. 

Wishing you all the best.