Dina108

Hi Connie: 

I wish the very best for your mom — did she have surgery and radition ? What about immunotherapy ? how was that for her. 

I know what even in a few weeks between my two CT scans the doctors have noticed a difference — so I don't know what that means until I get the CT scan. 

Thanks for your advise on a major cancer center. My ENT is nationally ranked, but not with cancer. So I feel I must get a second opinion for mucosal melanoma. This is really useful. I will look at the FB group. 

Thanks Celeste. This is incredibly helpful. Yes, should I be asking my ENT for the referring for the melanoma specialist or should I independently research and find out. I guess both. It's already been SO helpful to get the advice of folks who've been there. It's been hard, and I've not shared with any of my friends and immediate family, just because I know that the "C" word immediately would be death and gloom. I'm not sure if I am ready for that as yet. I really need to focus on some postive energy around me — for the fight. That's why this forum has been so god-sent. Thanks all for your posts and support — That much so means to me. 

Thanks, Becky. I found that as well. It was really amazing story. I feel that I need to educate myself regarding the options available. Statistics look so bleak with 25% after 5 years…is that really so ? I'd like to think about choices that I can make in the quality of life i have, if there is not much time time. I know I should not be saying this, but if the prognosis is bad, then I would chose quality of life over anything. Too much to do 🙂 

Thanks, I have not had my appointment with the oncologist yet. But now have an idea of what questions to ask. 

So do you guys go to places based on the specialization ?

I ask since so far, it's only my ENT specialist whose been talking to me, and he said that he'd refer me to the oncologist. Should I be finding the oncologist on my own — in which case, UVAs Center center seems to have some good people for musosal melanoma. 

For me, they want ot have the surgery first, assisted by the ENT/Neurosurgeon. I don't have my PET scan yet, they have not done the staging yet. It seems that they want to present it to the Tumor board — and will get back to me. It's the waiting and not having anything definite that's putting me on edge. So your answers are SO appreciated. 

Hi there, no, since it was just yesterday my ENT surgeon said that he would refer me to an oncologist, but I did not even ask if he/she was a melanoma specialist. 

Good luck with everything with you as well. I hear that UVA's center center is amazing. Im in Norfolk since my Richmond ENT referred to Dr. Han. Should I also consider getting a second opinion for the treatment — at UVa ?

Great suggestion: I'm at Eastern Virginia Medical School/Sentara in Norfolk, and my ENT Dr. Han said that he would refer me to an oncologist : don't know if he's a melanoma specialist. I will definitely do that. 

Waiting for the PET scan results so staging has not been done : just the biopsy from my nasal passages. Drs. have proposed to have surgery depending on what the PET results are. And they did mention Proton Therapy and immunotherpies as well. 

Any experience with Proton Therapy ?

So when will I get tested for the BRAF mutation is that something that happens before the immunotherapy ?

What about NRAS and C-Kits ?

Sorry for so many questions, but these seems to come up over and over again. 

VERY helpful post, thank you !

Jackie, thank you so much for your reply — what you said was so try about going crazy on the web. Its been a rollercoaster of emotions — and also wonderful to hear about your father : really gave me hope. What I had been reading on the web and the statistics were stark with very grim statistics — it's really helpful to also know what will be at stake for me. I have  a young son on the autism spectrum — and he's the light of my life: I feel that I have to fight for him. 

I so appreciate reading this, and I can see this forum will be my support system.  Once again, thanks for taking time to reply !