Melanoma

Hi littleloulou, Welcome to the online community. I can’t tell you what is next for you but I can tell you about me, my melanoma is currently only in my groin lymph nodes, scans are currently showing 3/4 nodes enlarged but they are a different 3/4 on each scan.

I should ask if when you say the cancer has remained exactly the same does that mean you are no evidence of disease, or stable? is it just in A few nodes but no sign of growth or shrinkage.

Back in 2015 my metastatic melanoma was in many nodes in my pelvic and abdominal area, Dabrafenib shrank them (I’m BRAF +) then Pembrolizumab in 2016 got me to all clear. I had a year of no treatment and remaining clear. A recurrence in 2018 in just one enlarged node had me doubting a return but a biopsy showed it was back and I was started on Pembro again. One year of Pembro and no change to that one pesky node. They discussed surgery to either remove that one node or to do a full dissection. My preferred route at the time was one only the effected one, with adjuvant Pembro again for one year hoping to be all clear and off treatment at the end of the year. So this may be something they talk to you about. Biopsies have shown that although there was melanoma in the node it was also necrotic, dying so the Pembro was still working.

Since that node removal I’ve been on Pembro I went from 3 weekly to 6 weekly, but I had a short break during covid from Feb 2020 to June 2020. Since June scans have been showing nodes resolving, but other ones becoming enlarged then resolving, but they are all in the right groin  area. In a way that’s strange as it was my left ovary that was affected in 2016. Surgery was mentioned on 31/12/19 but MDT decided that as it was difficult to reach and Pembro still working benefits of surgery was not clear. My last MDT brought up surgery again when my last scan showed fluctuations but they want to be sure they are taking the right actions so Pembro continues and I should have another scan in June. 

The confident me says I was once told my body is amazing and it’s still fighting this so being on Pembro is ok.

The super confident me says perhaps there will be a time to try my body on no Pembro as if it fluctuates on Pembro and with no Pembro what’s the point. 

The unconfident me says at some point Pembro will/ may stop working, but the upside for me is that consultants in the past have said not to panic as I could either be retried on targeted therapy, probably Dabrafenib and Tramatenib, or they could add ipi to the Pembro. I also have read that one of the consultants at my hospital has done trials with taking some of your T cells out treating them and returning them for people who immunotherapy did not work for and this has been successful, but I can imagine that like immunotherapy that may not be successful for everyone. 

I have spoken to someone who had been on ipi only over 10 years ago and she is still stable, her route will be a rechallenge of ipi if needed. 

Its very hard with the teams seeming so busy to ask what’s next, what they see as the long term plan for us, sometimes we just have to ask that question though. I had the questions all prepared for my last meeting but decided in the end it could wait until after the next scan results, and I’d get a more concrete answer hopefully.

I hope you are coping with what seems like endless treatment, I know it can be hard at times even when your feeling well, and feeling we should be very grateful things are going ok.