I was Staged at 3C after axilla clearance in April 2020. Adjuvant pembro was stopped after recurrence in same spot in Feb 2021. Further surgery in March and MRI and PET/CT scans were all clear at the end of May.
- June 15, 2021 at 11:53 am
Looks like it’s returned to the same location.
Surgeon has no margins left and it seems as if the Ulna nerve is at risk. Anybody had a similar experience?
Tim, I had my first recurrence removed by surgery almost two years after my initial primary which was removed by surgery; adjuvant ipi then 2 recurrences close together near the original site.
- June 15, 2021 at 9:03 pm
Given that my two surgeries had not succeeded they tried pembro removed one of these two recurrences, but the other stayed. After one year they were going to attempt a third surgery (they think it would have been successful but they talked about morbidity and i guess may have lost leg muscle or something or close to some nerve like you seem to be they didnt tell me all; would have been pretty serious surgery and off work 10-12 weeks i think). But before going for surgery (I had seen the surgeon and plastic surgeon) we added TVEC to the pembro – which after pseduo progression started to shrink the tumours and after one year of treatment it seemed to work. I was really lucky.
Did the pembro not work or do you think it slowed progression / recurrence? Could adding TVEC help? A bit of a long shot but could this be an alternative to surgery? Or can you do this before surgery (neo adjuvant) to minimize the risk of a recurrence after surgery?
Ask your doctor what s/he thinks or a second opinion
Good luck and best wishes
Thanks for your response Mark. You make an interesting point about adjuvant pembro. Did it fail totally or slow progression? The answer to that question wasn’t really addressed by my onc. team – I’m in UK and it was merely noted as anti PD1 failure. Low grade colitis kicked it at the time of the progression as well.
- June 16, 2021 at 12:39 pm
- June 16, 2021 at 9:17 pm
I am British (!) but thankfully (at least for being a melanoma patient!) live in the US. I took pembro to fight a recurrence – it didnt work but progression was quite slow and it did not spread either, so it didnt work but not a complete disaster either. The great thing about the US is that they kind of keep trying. I think in the NHS they mark you down as a “failure” and dont try the same treament again. I remember now on pembro I had side effects, so they took me off, put me on prednisone, numbers improved, then they put me back on pembro. I think in the UK they dont bother?
I guess for your case I am thinking neo-adjuvant before surgery, if they think the surgery is going to be tricky and may hit some nerve. In my case the neo-adjuvant only worked when adding TVEC. Not sure this is in the UK but I think it makes sense and anecdotally may work better for local recurrences (I dont have facts supporting this). I like the idea of injecting virus or something into the melanoma and then encouraging the immune system to fight.
Please tell me how it goes as I really would live to come back to the UK to live but I think w melanoma I am lucky to be in the US. I support the NHS but it really needs LOTS more funding, it’s a tragedy and I dont think British people realise how bad our healthcare is simply because of lack of funding.
good luck Mark
Hi Mark- yep, I think I’ll buy into your analysis /critique of UK health provision where melanoma is concerned!
- June 17, 2021 at 2:05 am
I’m lucky to be living in an area that is judged to be excellent in cancer provision and the speed of service I received was stunning during the Covid tsunami of 2020. Now that normality is returning, the service is slowing down.
My positive feelings dipped slightly after the first recurrence when the histopathology report came back without any mention of tumour infiltration or the TME. As you suggested, I was dumped into the ‘failure on anti PD1’ bracket and that was that! My status as NRAS positive is largely ignored (although I guess that particular elephant in the room is fairly widespread). TVEC is on the menu so we shall see…..
- You must be logged in to reply to this topic.