Becky

Long time lurker here ( son dx in 2009 at age 21 hes now 33!) I also remember Artie, Josh, MelanomaMike, Jerry, and Jake…and some others before them. Will never forget them. This board was so helpful to me way back then. Thanks for your update!

Its not me but my son..it was just before his 21st birthday when he got a melanoma dx ( state 3, oral)…tomorrow he turns 33!

Now that I think about it, it was Jerry that had mucosal melanoma and passed away. Charlie was also around at the same time and I am not sure what happened to him. Yes..this used to be a great forum. I still check every once in a while out of habit. I hope it is still at least useful for those who need it.

I do remember Charlie ( if its the same one you are thinking about) He did pass away a few years ago. When my son was first dx in 2009 this board was so helpful to me! There used to be a live chat option. Anyway, Charlie was one of those who was so helpful as he ( like my son) had mucosal melanoma. there are others throughout the years that we have lost that break my heart,,Kevin, Artie, Jake recently ..I think the young men are the hardest for me personally. PS my son is fine now, dx at 21 with stage 3 oral melanoma, now 32.

Ohhh I am reading this on Mothers Day and my heart aches for you. I have been lurking on this forum for years since my 21 year old son was diagnosed in 2009 ( He is fine today) . I always have looked for Jake updates. I have always been in awe of his resolve and you as a Mom letting him make all the hard decisions while still showing him love and support, Thanks you for taking the time to update us. Stay Strong

Becky

Hi mike, I don’t post much just lurk occasionally but always look for your posts. Just the fact that you spent an hour in pain just to make sure your “family” here is updated shows how amazing you are. I so hope Hospice can keep your pain to a minimum. You have a lot of people who care about you. xoxo

Hi Amy. In 2009 my almost 21 year old son went to doctor because of a sore/lump on the tip of his tongue. The doctor was shocked when the biopsy came back as melanoma…having done tons of research I Know how rare oral melanoma is!! They were able to do a sentinel node biopsy and it had spread to one node. He did interferon for a year ( this was all that was offered at the time except possible radiation) . He has been NED for 10 years thankfully ( Altus he hasn’t had a scan in 5 years). Hoping the TVEC injections work for you! Hang in there
Becky

My son was dx in 2009 ( oral melanoma, tongue, spread to one lymph node) . He was 21. He did the whole year of interferon and has been NED since..(..although he has not gotten a scan in 4 years.)

Hi Julia
I just want to say, my son’s dx and treatment was almost exactly like yours, only in 2009. He as 20, about to turn 21 and in college. Did a year of interferon ( took a semester off but still graduated in 4 years!) . He did have a swollen lymph node after that year and they did a needle biopsy and it was nothing…maybe just a reactive node from a virus. Hoping yours is the same!

Becky

Hi Brittney
My son had one of those rare weird ones ( on the tip of his tongue) . First two pathology reports called it melanoma , the third ( Expert at Mass General but not a FISH analysis) was more like yours…severely atypical spindle cell neoplasm, melanoma cannot be ruled out. He got a SLNB and one node tested positive. This was almost 10 years ago so things have changed but he did a year of interferon and has been NED ever since. That being said, at the time I did TONS of research and found many articles saying that severely atypical cells can be often found in lymph nodes…so a positive lymph node dissection would not necessarily mean malignant though they would probably treat it that way. I don’t know if this is helpful…maybe will confuse things! Good luck whatever you decide

My son was diagnosed with mucosal ( oral, tongue) melanoma stage 3 just before his 21 st birthday in 2009…he is now 31 and NED for almost 10 years

Well for him , treating as it it was melanoma meant 2 surgeries and a year of interferon ( all they offered back then) . In any case 10 years later he is healthy so that’s all I care about!!

When my son was dx because his was so unusual ( age 21, on his tongue) he got three opinions. Kaiser said melanoma, UCSF said melanoma then it got sent to an expert at U Mass and he says maybe melanoma, maybe not. I clung on to the “maybe not” hope, but in anywise they decided even with uncertainty to treat as if it was.

I am not sure if I can answer your question scientifically but I do know that melanoma is not always caused by sun exposure ( for example my son had it on his tongue) …sometimes no rhyme or reason as to where is could show up

Brittney
Yes he had a neck CLND before starting treatments. This was in 2009 though and I know there is more controversy about that ( as well as interferon). The Head and Neck surgeon did a great job with his tongue surgery so the recovery wasn’t too bad and you’d never know by looking . I think the CLND was a longer recovery. It was a rough year for him ( and us). He had just turned 21…now 31 and doing great.