SOLE

Congratulations on being 5 year NED. It is difficult for most people to cope and believe that 5 years can be reached. Today, I am 9 years NED and just came back to this forum to find out about Bubbles’ passing. I am shocked and very sad. I am happy to read Ed just above. Ed, you were Bubbles’ binome. I am again sending her family and loved ones my deepest and sincere condolences. As for your milestone, celebrate and rejoice. You are certainly learning to enjoy every living moment. Laugh and live hard! Sending everyone my best energy.
From Montreal, Canada

Like many others have written, I also got away from this forum for many years and now am finding out of Bubbles passing. This is shocking and so very sad. She helped me as well at my initial diagnosis in July 2016. I am sending my prayers to her family and loved ones. She will always live in our hearts. I am very sad.

Yes this forum has changed…

I’m coming to seven years NED if all checks out next september and I’m sending you my best wishes Bobman. I remember vividly reading your story seven years ago. My melanoma was acral and likely stage 2b/c. I’ve also had a few preventive removals over the few years but never as much.

That said, I will remain hopeful that this will be the last for you hoping the hawaian sun treats you well.

Best,

Marc

Much like Joycem, mine finally turned out 2b or 2c (initial biopsy cut right through it in depth so I’ll never know) at 2.85mm ulcerated, nodular, acral and amelanotic. That was in 2016 and we did not have any adjuvant treatment except for Interferon in Canada. I also declined. But I would have jumped on immunotherapy if it had been available. It is since the fall of 2019 here.

6 years NED at the time of writing with only surgery. I feel very lucky and count my blessings really.

M

My best wishes to you and your sister Barb. I do recollect reading you when I arrived at this forum 6 years ago now.

And thank you for the support you have given your sister. This is truly priceless.

Marc

For what it’s worth, a few months after my initial diagnosis of July 2016, after extensive research, I ordered a ctDNA test from Guardant360 through some very intricate medical channels. I had no idea if this test would prove helpful in melanoma but I was so desperately looking for answers. Result was no mutational residual disease found and they were all sorry they could not identify a genetic target… Anyway, here I am NED 64 months after the WLE and SLNB. Some days I think I really got lucky so far and some days I think this test has proven valuable for me. Les, you are a beacon of hope and a model of resilience. My very best wishes to you and yours for 2022 and to all people of good will.

Big hugs.

Marc

Dear Mary,

I am now a 5 year old + acral melanoma stage 2b/2c (not clear from the initial lesion biopsy, underneath my right foot where the sun never shines) survivor and I feel fortunate everyday to be alive and like you, I had a mole in my belly button. I actually have had a lot of moles forever. A year ago this week, I went for an inguinal hernia repair and had my general surgeon plan for removing that mole while I was in the OR. It healed very easily (with quite a few stitches in my case due to the laparoscopic nature of the surgery procedure through my belly button. It could be much less invasive for you in my opinion but of course I dont know your case and I’m not a doctor!) So, I encourage you to first have this checked out by the proper physician and dermatologist and arrange for a removal if appropriate. In my case, I have had no problem at all and am fully relieved of that mole worries. It is not unusual to have atypical moles by the way. I have had several removed over the last few years.

Wishing you the best and sending my sincere condolences for your father’s passing.

Sincerely,

Marc

I just wanted to follow up on my post of July 12th here.

What I thought absolutely impossible in 2016 has happened.

I am now confirmed 5 years NED.

May NED be with you all forever.

Sending everyone my most heartfelt loving thoughts.

Sincerely,

M

Hi,

Diagnosed July 13, 2016 with a

very very rare ulcerated nodular acral melanoma. First thought to have rare isolated cells in one lymph node (making me stage 3b AJCC7 at the time) then turned out there was apparently a staining error and re-analyzing the SLNB slides 3 times made me either stage 2b or 2c AJCC8.

5 years NED tomorrow. To be confirmed by PET/CT scan Sept. 2nd.

Unsepected and indescribable life-transforming events from beginning to this day.

My prayers are with all of us.

Humbly and with a heavy heart, I’m sending you my thoughts and prayers. May you also find peace.

M

Never let anything like a blood blister turn you away of consulting a dermatologist. My melanoma was flesh coloured (amenalotic) and turned like a mushroom like wart with pinkish red colour on top after a few months. At least 2.85mm modular ulcerated melanoma under the right foot. Just next to an old 20 year wart I did not care to treat. Enough said. Good luck!

To all who have lost a dear one on this forum,

 

Words are futile but they are one of the few tools we have to say something.

To Adriana’s husband; my humble prayers and respect to you.

I came here in 2016 and read your story as it unfolded.

Respect to all of you.

 

M

 

Words will always be futile unfortunately. But it’s one of the few tools we have to express ourselves. Wish to see you sometime Mike.

M

Well, I’m lost with this format but it’s to be expected at first. It seems less intuitive. Wishing MRF folks to improve the experience in 2021.

Happy to read Bobman again. Acral melanoma is still very obscure.

 

Be safe all