› Forums › General Melanoma Community › Next Steps after Recurrence
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Bubbles.
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- April 9, 2018 at 5:52 pm
To cut a long story short, here is a brief synopsis of my history:
I was previously DXed with melanoma on my left toe – June 2014. I have it removed (most of the toe really) that July, along with an SLNB which was positive. A full dissection of my left groin in August of 2014. Subsequently, I had a second resection of lymph nodes (near my left kidney) in November of 2014. The tumors were tested and I am BRAF Negative.
Thereafter, I complained of bone pain and a subsequent PET revealed a variety of melanoma in my chest bones, femur and potentially on my liver. I began Yervoy in December 2014 – the pain cleared up within a few weeks but resultant scans after my 4 courses of yervoy did not show improvement. I began Keytruda (only) in April of 2015.
After about 12 Keytruda infusions, a PET scan suggested that I was NEAD. There were spots on my liver that many doctors have interpreted as suspicious of melanoma, but it is not clear. Given their historical changes and existance for years, many drs. believe they may not be. I stopped Keytruda in September of 2016.
After about 1.5 years of NEAD, I had a single recurrence of my Stage IV melanoma – it was an approx. ~2 cm "uncomplex" tumor in my right adrenal gland. It was fully removed and apparently fully intact in my adrenal gland. I posted this previously. The surgery was, frankly, a cake walk compared to others.
I returned to my oncologist and we discussed next steps. My doc took the steps and my insurer approved Keytruda (17 infusions). However, as I explained to my doc, I also feel fine. We decided rather than an immediate treatment that she order a CT and reevaluate me at present. Apparently a recurrence this late in the game is a bit of an odd ball. We discussed potential resistant melanoma clone cells and also rogue cells still susceptable, but most of those seem to occur much faster than me. I got the impression that someone having a recurrence like this was kinda rare.
At this point, I'm getting a scan Wednesday and then meeting my doc the following week, but seem things surprisingly up in the air. Does anyone have an experience or recommendations or questions to ask? To reiterate, I'm BRAF negative, so that option seems foreclosed presently. Additional genetic testing didn't reveal anything beneficial, but my doc suggested she had some other research to look into.
Thanks again – this place is a great resource as always.
-Justin
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- April 10, 2018 at 12:47 am
I'm not sure I understand everything you are saying/asking. But, unfortunately folks can be NED or NEAD and stop treatment…hold in that position for years and then develop more tumors or even just one….out of the blue. "Jubes" on the board did just that. She opted to have her solitary lung tumor surgically removed and do nothing else. You can read her posts on this forum. I am currently helping a dear one, who had endured many treatments, but then doing so well and solidly NEAD that all treatment was stopped….but a bit down the road…here we go again with a brain met and pehaps another localized one in the body. So…it is sadly, not as rare an event as we would like. That's why melanoma sucks great big green hairy wizard balls!!! We do everything right. Beat the beast back…then here we go again.
And this is from someone who has been dealing with melanoma since 2003. On the good side…this is from someone who has been dealig with melanoma since 2003!!!!!!!!!!!!!!! I'm still yelling! And you can too!!! Sometimes additional surgery is all you need. Sometimes, you need another round of systemic therapy. Talk to your docs. Do your homework and do what is best for you. Hang tough. Yours, celeste
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