Melanoma Research Foundation | SOLE | Activity https://forum.melanoma.org/user/sole/activity/ Activity feed for SOLE. Mon, 20 Apr 2026 14:01:40 -0400 https://buddypress.org/?v= en-US 30 hourly 2 7d336d337644ac884d2e116063e25ab8 SOLE replied to the topic I was diagnosed with an aggressive invasive melanoma on Friday in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/i-was-diagnosed-with-an-aggressive-invasive-melanoma-on-friday/#post-280703 Mon, 14 Jul 2025 00:04:13 -0400 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…Read more

]]> af7045a15bc412a7a5f85333913f5dde SOLE replied to the topic We Lost a Marvelous Friend in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/we-lost-a-marvelous-friend/#post-280702 Sun, 13 Jul 2025 23:54:09 -0400 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.

]]> 5c7017180a3d3f27bd4f65537013606c SOLE replied to the topic 18 primaries and STILL counting in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/18-primaries-and-still-counting/#post-278441 Mon, 27 Mar 2023 08:18:52 -0400 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…Read more

]]> 0942ee5e8f3171a57a5c7c9859083aa6 SOLE replied to the topic Update in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-46/#post-277965 Tue, 20 Dec 2022 17:51:19 -0500 My experience is obviously personal and yours is entirely different and will remain so.

That said, it took me a good 2 years to be able to dig myself out of my psychological situation. Personally, once I crossed the statistical 24 months without recurrence, I started climbing back up. Next threshold was 3 years and finally last year, at 5 years.…Read more

]]> a2ee847503a9d7280a087b9e2662b9ce SOLE replied to the topic Stage 2C treatment advice in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/stage-2c-treatment-advice/#post-277929 Sat, 10 Dec 2022 17:51:39 -0500 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 a…Read more

]]> 015a14293033960a48789a816d33d995 SOLE replied to the topic 5-year NED mark in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/5-year-ned-mark/#post-277032 Wed, 20 Jul 2022 11:11:57 -0400 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

]]> 7e40b1085503b6063a1c5444bc5df0be SOLE replied to the topic Happy New Year - an update and some intel in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/happy-new-year-an-update-and-some-intel/#post-276226 Sat, 15 Jan 2022 04:39:25 -0500 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 t…Read more

]]> f6ef270076ec127da0712efdfd7a261c SOLE replied to the topic atypical mole in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/atypical-mole-4/#post-276224 Fri, 14 Jan 2022 15:45:55 -0500 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…Read more

]]> 4c1422172ac7f3ae40bd478375b08506 SOLE started the topic Update in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-46/ Tue, 07 Dec 2021 14:29:20 -0500 I thought my current situation could give a little hope so I’m giving my update. I have not crossed stage 4 and so I’m reluctant to boast or to come out inappropriate here.

Anyhow, last September 9th 2021, I have successfully crossed the 5 year NED threshold after a very bad nodular ulcerated, at least T3b, initial lesion under my right foot. I g…Read more

]]> 53ddec888eb7f3fc50ff4c56db901642 SOLE replied to the topic Who is NED for 5 or more years? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/who-is-ned-for-5-or-more-years/#post-275624 Tue, 07 Sep 2021 20:59:07 -0400 I just wanted to follow up on my post of July 12th here.

What I thought absolutely impossible 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

]]> 6d519a4f47dae691993f5ae27599cf31 SOLE replied to the topic Who is NED for 5 or more years? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/who-is-ned-for-5-or-more-years/#post-275335 Mon, 12 Jul 2021 10:57:14 -0400 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…Read more

]]> c175f7c4295f310c8ff1731b9b21fc76 SOLE replied to the topic Mom of Jake - for the old friends here in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/mom-of-jake-for-the-old-friends-here/#post-274746 Sat, 22 May 2021 01:20:33 -0400 Humbly and with a heavy heart, I’m sending you my thoughts and prayers. May you also find peace.

M

]]> b1ec8558680b139546403aa09fca87b3 SOLE replied to the topic Blood blister versus Nodular Melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/blood-blister-versus-nodular-melanoma/#post-274191 Mon, 08 Feb 2021 15:50:04 -0500 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…Read more

]]> 477bbdfcc67288a985e72c73dfbd3bd0 SOLE replied to the topic Has anyone received intrathecal topotecan for LMD in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/has-anyone-received-intrathecal-topotecan-for-lmd/#post-273680 Wed, 23 Dec 2020 05:38:01 -0500 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

 

]]> 879d0b0e3c6b53d8879c09834e1b5653 SOLE replied to the topic Melanoma Mike in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/melanoma-mike-8/#post-273679 Wed, 23 Dec 2020 05:28:26 -0500 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

]]> e436fee56323d960a42dd15034861e1b SOLE replied to the topic Hmmmm..... The NEW and IMPROVED MPIP! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/hmmmm-the-new-and-improved-mpip/#post-273615 Mon, 21 Dec 2020 02:24:17 -0500 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

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