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The Story so far

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The Story so far

Posted By
hxcadam
2/7/2020 6:36am
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Replies: 9

Hello everyone. I'm Adam. I joined years ago at first diagnosis but never posted. In Demember of 2016 I had a bleeding mole that wouldn't heal. Derm cut it off and found it to be Melanoma. It was on my upper right chest wall. 2.5mm deep. Diagnosed Stage3c. Went through the WLE which found the sentinel node had a trace amount of melanoma so they went back in and took all of my lymph nodes in my right arm pit. Thankfully no lymphedema. Had 2 rounds of ipi around June/July of 2017 but was taken off due to getting colitis. Was on 6 month scans until last week when on my CT showed 2 small spots (one being 1.5cm and one being 2cm) in my left lower lung and a small spot at 1.5cm on my spleen. Went for MRI this last Tuesday and was supposed to go for a lung biopsy today but the MRI showed 2 small spots so biopsy cancelled as that confirmed it was the melanoma spreading. Right now my oncologist at MSK Basking Ridge in NJ is suggesting radiation to the brain mets and possibly the lung/spleen mets and then start on immunotherapy. My reason for the post is to ask for advice/opinions and seek moral support.

Thanks,
Adam

tkoss - (2/7/2020 - 8:58am)

you seem to foreshadow one possible future for me. I had SLNB and they removed 4 nodes. the PETscan didn't reveal any more melanotic nodes or tumors, but it certainly didn't rule out some small masses being to small to reveal themselves yet. As 3C I have only been prescribed monotherapy, which has proceeded without side effects.

frankly the whole thing is a little surreal because I have no symptons and no side effects, but I do have a port, and a stack of letters from docs and insurers to remind me I have a debilitating disease.

I am afraid I cannot offer you much more than a shoulder to cry on.

It could be worse. we cold be trapped on a cruise ship, quarantined , with 64 case's of coronavirus on board.(todays's news if you aren't aware).

Bubbles - (2/7/2020 - 10:58am)

Hi Adam. Very sorry you have the need to post now. Many of us are still here post radiation to brain mets and various other bits and bobs!! It ain't fun - but it is doable!!! Make sure you are seeing a melanoma specialist - or at least an onc who takes care of lots of melanoma patients. It can mean everything.

We have learned that while radiation alone is not particularly effective in melanoma, when combined with systemic therapies, a response rate is gained that is greater than either therapy as a single agent. Here are a zillion reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi...

As you can see from those articles, CONCURRENT therapy is best. There is absolutely no reason to delay systemic therapy until "after" radiation. We have learned that using radiation concomitantly, does NOT cause any increased rate of difficulties or side effects but DOES save lives.

Additionally, though you had colitis on ipi in 2017, you are not doomed to experience it again on immunotherapy and even if you do, with quick recognition of the situation, it can usually be managed and patients be allowed to continue therapy in most cases. Here are some reports proving that even folks who have existing autoimmune disease (or side effects to prior immunotherapy) CAN take immunotherapy successfully: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/02/for-j...

If you are interested, here is a primer I put together regarding approved melanoma treatments generally: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan...

Which brings me to your BRAF status. Do you know if your tumor is BRAF positive? I think your current plan is very reasonable - but that is a piece of intel that is important to know going forward.

So...lots of info. It won't be easy. But you can do this!!! I'm still here - Stage IIIb in 2003. Stage IV with brain and lung mets in 2010. Still NED for melanoma after a nivo trial. Ask more questions as you have the need. There are many smart and caring peeps on this forum. I wish you my best. Celeste

hxcadam - (2/7/2020 - 1:35pm)

Yes I'm BRAF V600E positive at least the first one was. I assume that means the recurrence is. That's for taking the time to post. Much appreciated.

BrianP - (2/7/2020 - 11:14am)

Hey Adam,

Sorry you are facing this challenge. We've had similar journey's. In 2006 I had a small mole removed from my upper left chest that turned out to be melanoma. It was .91 mm so not too great a risk for recurrence but in 2011 I noticed swelling in my left armpit. Melanoma had spread to the lymph nodes in my left armpit. Had a complete lymph node dissection. Couple years later found small lesions in my small intestines. I've participated in two trials. First was a 2 year combo trial of Opdivo and Yervoy from 2013 to 2015. The second was an adoptive cell therapy trial in late 2016. That was my last treatment and fortunately still going strong.
Piggy backing on what Celeste said about seeking out a melanoma specialist. Two of the best in the world are in NY. Dr. Wolchok at MSK and Dr. Webber at NYU. If you are up for second opinions and going into the city I would highly encourage you to seek out these two individuals.
Best of luck to you.
Brian

hxcadam - (2/7/2020 - 1:39pm)

Thanks I actually saw Dr Wolchok a few years ago for a second opinion about my aftercare. Originally was receiving care from RWJ but felt they really mishandled my treatment post surgery. I now see Dr Iqbal at MSK in Basking Ridge.

marta010 - (2/7/2020 - 2:17pm)

Hi Adam - hopefully the plan is to zap the brain mets with gamma knife/cyber knife. As a ray of hope, my husband was diagnosed in 2012 with a large brain met and mets in his cervical lymph nodes. He's had just about every available treatment and is still hanging in there. We're also keeping an eye on recent spleen mets and hope to see shrinkage at his next scan in March. Sending positive thoughts your way.
Ann

BillB - (2/7/2020 - 10:19pm)

I would highly recommend using one of the melanoma specialist at MSK IN NYC. I’m sure your current doctor is good but she doesn’t specialize in just melanoma. Just my 2 cents.
Bill

hxcadam - (2/8/2020 - 1:38pm)

Sadly my insurance won't cover MSK in Manhattan. Only the NJ sites.

doragsda - (2/8/2020 - 5:56pm)

Hi Adam, my wife had two brain mets in July 2017. They did gamma knife and followed it up with 4 doses of ipi/nivo then two years of nivo, which she just finished in September. She is now NED and doing very well. The current thinking with many melanoma oncologists is to skip the radiation and jut go straight to the immunotherapy, and they seem to be having a lot of good results that way with brain mets.

Make sure you are seeing a melanoma specialist and not just a more general medical oncologist. Best of luck to you.

Dave