- September 13, 2022 at 5:12 pm
I am new here. I have been lurking here for the past couple months, but the push is finally coming to shove as I have to make a treatment decision soon.
Here is my story: I was diagnosed at stage 2c shortly after my second child was born. I had had the bump checked twice throughout the pregnancy and the derm said it was hormone-related and should resolve after birth. I should have gone with my gut, but who doesn’t want to hear a doctor say they think its benign.
Because there was no lymph node involvement, I have to decide whether I should go through treatment – Pembrolizumab – or not. I am leaning towards it.
I have done research on it, but I am here looking for any insight anyone can offer me. For what it is worth, I am healthy and have no family history of autoimmune disease, but I am worried about side effects especially with two very young children.
One question I have is : if side effects get bad, is it worth doing half the treatment? Is something better than nothing?
My other question is: I have had plenty of atypical moles in the past. I am worried if I start this it would make benign moles become dysplastic. Has anyone had an experience with that?
I plan to discuss all this with my onc soon, but again any info or experience anyone has is very much appreciated.
When taking care of an 8 month old – sometimes you think you have a minute, but then you don’t! At any rate –
- September 15, 2022 at 2:19 pm
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.
To answer your specific questions…
- September 15, 2022 at 2:30 pm
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
- October 12, 2022 at 2:49 pm
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.
Thanks for the reply Joyce. That’s very reassuring. Hitting the five-year mark seems like a big milestone! I also did the castle test and got a “2A” which isn’t great, but you never know with these things.
- October 12, 2022 at 4:13 pm
I decided to do treatment and will start soon. My Onc made is very clear that there is still a risk of treatment failure and recurrence, but I hope it will give me some peace of mind.
My best to you too!
SOLEParticipantMuch 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.
- December 10, 2022 at 12:51 pm
6 years NED at the time of writing with only surgery. I feel very lucky and count my blessings really.
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