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I’m apparently kind of an unusual case … not really in a good way though

I’m apparently kind of an unusual case … not really in a good way though

Posted By
gopher38
9/8/2019 5:21pm
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Replies: 8

Hello people,

Looking for some feedback/opinions on my situation, and particularly on CLNDs. Here’s the backstory:

Diagnosed IIIB 18 months ago. Resected and scans clear. Put on 12-month blind clinical trial of either opdivo or yervoy+opdivo. Scans clear through 15 months. Last month, ground-glass area in CT scan, which they thought might be a slow growing tumor, but they didn’t think it was melanoma. So I was starting to feel pretty good, and then … dermatologist visit finds three new melanomas on the skin. Lab report indicates probable distant spread from original primary, which would make me stage 4. Oncologist disagrees though. I had just done a CT scan, and other than the ground-glass area, which he DOES NOT think looks like melanoma, they didn’t see anything. Orders a PET scan, but says that - until proof to contrary - says that we are going to treat it as three new primaries. Should say that they have been pretty widely-dispersed on body. First, primary was on middle-upper back, the next three on left shoulder, right chest and left buttocks. PET came back clean (even ground-glass area wasn’t showing up-take).

So, last week, I had three simultaneous WLE/SLNBs. The people at Abbott NW in Minneapolis told me that was a record. Never seen three simultaneous WLEs, and I’ve now had 4 melanomas (perhaps all new primaries, but I’m not convinced that they know for sure) in two years). Bad news is that they found a small tumor in the sentinal lymph node for ALL three cases.

Wondering about next steps. I made it through my immunotherapy (whichever it was) with only moderate shortness of breath and dry-mouth. Assuming that the other three are unrelated, it appears that it was possibly effective and NOT uneffective (no spread). We didn’t do a CLND, partly because they said that there was a study that said that it didn’t improve survivability, and second because my tumors from the back were found in one lymph node on both sides, so they would have had to take out both the right and left side axillary.

I’m pretty sure that they will recommend return to immunotherapy, which seems logical to me. Here’s my question. I’m afraid that they are going to recommend the CLND this time around, and it would be three areas this time. Right axillary, left axillary, and left groin. For people that have had the CLND, how bad was it, and how did it affect quality of life? Has anyone ever had all lymph nodes from two areas removed? What about three? I’m pretty sure that - if it’s suggested - I’m going to refuse, but I would love to get experiences from people who have had it. Thanks for reading.

I had a CLND in August 2014. That area of my neck is still sometimes a little sore. That CLND did not prevent the spread melanoma to several of my bones. I wish that CLND had not been done.

Wow! Three new primaries and positive in all three basins in addition to your original location! You have hit a grand slam in the melanoma "game". In the 20 years since my first mm I have met many many fellow patients both from here and at Moffit in Tampa. But I have never heard a history like yours. I personally have to agree with your opinion about cleaning out three basins. Each carry the same risks of possible infection, edema, residual pain and in your case it would be times three! Risk vs reward seems poor for the reasons you have already stated. I am not qualified to give you sound advice. I can only say that if I was in your shoes I would not have three new CLNDs. I hope your Onc has some good treatment options for you! God bless you Edwin.

Hey Gopher! Well - melanoma certainly sucks great big green stinky wizard balls, doesn't it!!! DANG! In regard to CLND. I've had two . To right axilla due to a positive sentinel node with cutaneous lesion to my right back in 2003. To my left axilla in 2007 due to a second primary to my left forearm - no nodes positive. I did okay. Some problems with collection of fluid in area (seromas) during early recovery phase. Have been lucky to never develop lymphedema. (Folks are more at risk for lymphedema when they are older, overweight, or have sentinel nodes removed from the groin...though it can happen to anybody.) BUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Mine were done back in the dark ages of melanoma!!!! We know better now. Though it seems counter-intuitive, CLND had been proven to provide NO survival benefit whatsoever!!! (Like Edwin, I progressed to Stage IV with brain and lung mets in 2010 despite the surgeries I had.) Here is a recent post and report on CLND, with tons of other reports included as well (see the links within): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/03/clnd-...

My best advice: Make sure you are seeing a melanoma specialist (and perhaps you are already). Make sure they do BRAF testing on your tumors to see if you could benefit from targeted therapy. Hang in there. Keep us posted. Yours, celeste

Hi Gopher38! Oh boy, thats a lot to take in and decide, having all or "most" of the lymphnodes taken out is crazy to consider, not because of the pain "or not" not sure if its similar to anyother surgery, i dont know, iv only had "multiple" nodes extracted from my left groin, pain was tolerable its just the drain bag & hose that was a "Be Eye- Tee See H!" Haha...had that darn thing for over a month, had to measure its contents (Lymphatic Juices haha) into a cup and Log it, the less it drained, the more my body was absorbing it on its own...Heres a link from NCBI which i trust, great site for anything cancer, it concerns Lymphnode extraction (CLND) im sure theres 33/33/33 (good/bad & no benefits, the other 1% is "whatever"! Haha..) to why one should do it...heres the link!
https://www.ncbi.nlm.nih.gov/m/pubmed/30232648/

Melanoma Will Not Beat Me or my MRF Family!
www.wespark.org
www.covvha.net

Knowing what I know I would not have three CLND's. Here is a recent article
https://www.ncbi.nlm.nih.gov/m/pubmed/31028497/
I have no known primary however I have a friend who had a melanoma primary on her foot and she had extensive surgery. Six months later it spread to the groin and she had CLND which left her with quite severe lymphedema throughout her entire leg. At this point she staryed combo immunotherapy but had to stop due to severe side effects. While dealing with those she had a brain metastasis. Two weeks after gamma knife she had multiple brain mets and went on 6 months of chemo in a hospital. She resumed immuno on Opdivo only. One year later, she had a melanoma metastasis in her omentum and just had it recently removed. Her surgeon is concerned because there were melanoma cells in the resected tumor fluid. She has her tumor cells stored for TIL in the future should she need it.
My own melanoma oncologist informed me that it is enough to have 2 or 3 melanoma cells in the blood or lymph and these can remain dormant for years yet something may cause them to eventually grow and metastasize. There is no way any surgeon can remove all melanoma cells when removing a tumor so why take out the lymph nodes? To me doing CLND's just does not make sense. Having said all this you need to speak to one or two melanoma specialists and inform yourself so that you can make your own decision about what is right for you. Only you can do that.
Wishing you best of luck regardless of what you decide.
Melanie

Knowing what I know I would not have three CLND's. Here is a recent article
https://www.ncbi.nlm.nih.gov/m/pubmed/31028497/
I have no known primary however, I have a friend who had a melanoma primary on her foot and she had extensive surgery. Six months later, it spread to her groin and she had CLND which left her with quite severe lymphedema throughout her entire leg. At this point, she started combo immunotherapy but had to stop due to severe side effects. While dealing with those she had a brain metastasis. Two weeks after gamma knife she had multiple brain mets and went on 6 months of chemo in a hospital. She resumed immuno on Opdivo only. One year later, she had a melanoma metastasis in her omentum and just had it recently removed. Her surgeon is concerned because there were melanoma cells in the resected tumor fluid. She has her tumor cells stored for TIL in the future should she need it.
My own melanoma oncologist informed me that it is enough to have only 2 or 3 melanoma tumor cells in the blood or lymph and these can remain dormant for years yet something may cause them to eventually grow and metastasize. There is no way any surgeon can remove all melanoma cells when removing a tumor so why take out the lymph nodes? To me doing CLND's just does not make sense. Having said all this, you need to speak to one or two melanoma specialists and inform yourself so that you can make your own decision about what is right for you. Only you can do that.
Wishing you best of luck regardless of what you decide.
Melanie

I apologize for the double post. Initial one said the site could not be reached.

I am so sorry to hear your news. I am not qualified to say what to do but for me I had CLND in my groin 7 years ago and still suffer from severe lymphadema and I have had 7 new lesions over the last 6 years! I am not convinced there was any benefit of having the CLND since it keeps coming back. I have been on tafinlar and meckinist and now on keytruda for 2 years and my second lesion was just found this week even though I am still on keytruda. Maybe things would have been worse without the CLND who knows but it didn’t stop my melanoma from coming back. I would definitely share all your concerns with your oncologist before making a decision. I pray that you can make a good informed decision and that they can get you back to NED quickly and keep you there. This is definitely an ugly disease. Prayers.