Stage 2C treatment advice

Sorry you are having to face all this, YoJa. Here is a zillion posts and articles, with many additional links within, to all sorts of adjuvant information: Adjuvant treatments for melanoma

Oops, duty calls. Will write more in a bit. Celeste

When taking care of an 8 month old – sometimes you think you have a minute, but then you don’t! At any rate –

Here is a general primer of melanoma treatments I put together – and then updated this year – that you may find helpful: Primer

I have long been an advocate for adjuvant treatment to become available (as you can see in the links – the first option was not FDA approved until 2017. My story – diagnosed at Stage IIIb in 2003 with 10 and 12 year olds. No effective treatment available for melanoma. So had it removed and watched and waited. Another cutaneous lesion in 2007. Removed. Still no effective treatments. Progressed to Stage IV with brain and lung mets in 2010. Still no FDA approved treatments, though ipi (Yervoy) was in trials. In April of 2010, had brain zapped. Upper right lobe of lung removed. Finally, in Dec of 2010, I gained entry into a Phase 1 trial for Nivolumab (Opdivo). The trial had two arms – one for Stage IV patients with active disease and another for those who, like me, would be taking it as adjuvant since our bits and bobs had either been surgically removed or treated with radiation. My fellow 33 ratties and I did extremely well. I have been NED for melanoma since 2010 with no further treatment. So, YES!!!! Had I had the option of an adjuvant treatment back in 2003, I would have leapt at the chance. However, what we do in life is extremely personal. Whatever you decide, I wish you my best.

PS – That 8 month old is my grandson. The joy of experiencing his existence was something I never dared dream for many years. And yet – here I am.

Celeste

To answer your specific questions…

There is no scientific data that would indicate other moles would become problematic because you were on Pembro.

Side effects vary a great deal from person to person. However, despite the pretty ubiquitous side effects of rash, joint pain, and fatigue – I still worked 3 12 hour shifts a week as a Pediatric NP during the 2 1/2 years of my treatment. I experienced a lot of wheezing – due to manageable pneumonitis (I am a known asthmatic) – and mouth ulcers which are known side effects, but not as common. Through my trial and the patients that followed, we did learn that side effects are generally cumulative – though not always. So, if you are taking immunotherapy for only one year, your chances of significant side effects are less than for someone who takes it for years. Further, taking an anti-PD-1 product (nivolumab [opdivo] or pembrolizumab [keytruda]) as a single agent – rather than say ipi combined with nivo which is the first line treatment for Stage IV melanoma – is much better tolerated as we have also learned that ipi if the bad boy of side effects. HOWEVER, in melanoma world, everything has to be crazy and some folks experience significant side effects with even one dose. Still, that is not the norm. And finally, if it turns out you cannot deal with the side effects and must stop treatment – in my opinion you have lost nothing and possibly given yourself an advantage.

Hope that helps. c

I am well, Martha. I run, hike, work, play, garden, chase (crawl???) after a little 8 monther. There are many scars. But I am here! LIVING. c

Hi
I had a stage 2C nodular melanoma that had been on my arm a long time. It was amelanotic so just a weird pink bump that my primary care doc said was a fibroma and not concerning.

When I finally got it removed it was very deep but no node involvement detected. I had castle testing done and it came back 2b- most likely to return/spread.

At that time I was only offered interferon which I declined due to lack of evidence of effectiveness/likelihood of side effects and my phase of life caring for both children and elders.

6 years out and no recurrence or spread. If immunotherapy adjuvant had been offered to me then I might have tried it though.

Best wishes with your decisions and for a long and Mel-free future.

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

I was stage 1b and it came back stage 3b in 2016. My suggestion is do it! It could stop you from having to ever deal with progression. If it’s a single agent it should be bearable but again you never know. They beauty of doing it proactively is you can stop if it’s too much. I did end up having an adverse reaction when I was on full dose of braf mek. Caused severe colitis, two perforations, 40 days in patients, six hospital stays. Entyvio for colitis for six months after nine months of 30mg steroids everyday, six colonoscopies and dialation. Surgery to remove 16 lymphnodes. 15 months later another surgery for additional lymphnode 2023, Drug reaction to gabepentin in April 24, needed for nerve damage from back to back surgeries. Now on ipi nivo for satellite tumor in same region. Will have another surgery, I am praying this treatment will work and keep it at bay but the last two and half years have been HARD. If you can try to ensure it won’t come back do it!!! You don’t want to be in a position where you know the outcome if you don’t do it! Good luck to you! Not trying to scare you but progression can happen so being proactive would be no brainer for me! Good luck and whatever you decide, realize it’s all a dance. Nobody really knows, we are all just hedging our bets!