› Forums › Cutaneous Melanoma Community › Newly diagnosed
- This topic has 16 replies, 7 voices, and was last updated 6 years ago by
jszeoli.
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- February 17, 2018 at 11:22 am
Hi;
I am Ted. I have had a bit of a weird experience. A few months ago I found what I thought was a subcutaneous cyst on my back over my shoulder blade. It was quite deep under the skin with nothing on the surface. Checked with my primary care, no said, no worries unless it bothers you. Fast forward to January, lump is burning a little and surface has become a little reddish, go in to have it excised in a general clinic, the PA upon opening me up says, "oh, this isn't what I expected". Sends it off for biopsy. A week later I get the results, The tumor (not in a lymph node by the way) is a secondary metastatic melanoma. We have no idea where the original tumor was. I have now met with an onco, pet scan is clear except for leftovers in my shoulder which will be excised in the next month. MRI of my brain clear as well. That was all good news. I am diagnosed stage IV, is that appropriate since it has not spread to lymph or organs? I am starting Nivo every two weeks for the next year. Would love to hear if anyone else has similar experiences and what I can expect from the Nivo infusions. Do people have ports? Any info is appreciated.
Ted from Minnesota
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- February 17, 2018 at 2:41 pm
Hi Ted,
Sorry you are here. This "melanoma primer" I put together will probably help you understand the new language you are dealing with as well as the treatment you are facing:
I had my first cutaneous melanoma lesion in 2003, second in 2007, brain and lung mets (treated with SRS and surgery) in 2010 and was in a nivo trial from Dec 2010 – June 2013. I remain NED (no evidence of disease) today.
Some folks get a port put in to aid access to the infusion. I would say most do not. I didn't. But, for many it is not only essential, but very helpful.
Side effects vary in degree and intensity from person to person. There is a link within the primer to many others that talk about side effects to immunotherapy. However, here is one more specific to Nivolumab (Opdivo) and Pembrolizumab (Keytruda) both of the FDA approved anti-PD-1 products: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
As to your status….with the info you posted it is a little hard to say….but – I would be calling you Stage IV because it sounds as though you had a subcutaneous nodular lesion distant from an initial cutaneous lesion. I would probably be calling that lesion a "met" with an unknown primary rather than a second primary. It is a bit of a nonessential word salad to define it. The great news is….it was found. Will be removed in total (immunotherapy works best with a low tumor burden), the rest of your body was clear, and you are in line for one of the best melanoma treatments going!! Hang in there. Ask more questions as you need. I wish you well. Celeste
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- February 18, 2018 at 6:29 pm
Hi Celeste, came across this trial using a different Intratumoral injections called IMO-2125 + Ipi for patients that have failed Pd-1 or Pd-1 refractory. The trial is being run at MD Anderson with all there big names signed on like Patrick Hwu and Dr. Diad, Dr.Michael Davies. http://www.iderapharma.com/wp-content/uploads/2017/11/Idera-SITC-Oral-Presentation-FINAL-11.11.2017.pdf http://www.iderapharma.com/our-approach/key-publications/
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- February 18, 2018 at 6:30 pm
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- February 18, 2018 at 7:22 pm
Yes. I've seen some stuff about it. Here are two posts I've written on the subject: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=2125
I hope it is the next great thing. I'm a bit worried though as most of the "data" available is for very small numbers and more in the form of an advert for MDAnderson and Idera. But…I would love it if it beats the 50% or so response rate we've got going with the ipi/nivo combo and/or fixes all the folks that anti-PD-1 didn't!!! Keep digging and sharing! I love it! – c
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- February 19, 2018 at 12:21 am
Hi Celeste, I think there will many more similiar small trial put out by MD Anderson, I watched a presentation a couple of years ago with Pam Sharma of Md Anderson and the point she was trying to make on the panel is that a new way of running clinical trials needs to be set up where you can explore ideas in small groups to look for prof of concept. They have become big on getting tumor sample then treating before doing surgery in adjuvant setting, I kind of like the thinking of gattering data from small samples before starting big trials, and with less human mice available in melanoma these days it might be the way of the future. Much Love from Canada!!!Ed
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- February 19, 2018 at 12:27 am
Oh, I also came across this interesting article on a case study of Inflammatory demyelination polyneuropathy vs leptomeningeal disease in Melanoma using Ipi. If this science article won't put someone to sleep at night, no science article will.
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- February 19, 2018 at 12:27 am
Helps to put in the link!!! https://jitc.biomedcentral.com/articles/10.1186/s40425-018-0318-x
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- February 18, 2018 at 1:36 am
Stage IV seems appropriate, since they have characterized it as a metastatic lesion.
My wife is Stage IV and receives Nivo every two weeks (after receiving combo Ipi/Nivo for 4 infusions initially). She is about 6 months into immunotherapy at this point. She does not have a port and it seems to work well for her just doing an IV every time. She has to have labs prior to each infusion (a day or two prior) so she switches arms – blood draw in one arm and IV infusion in other arm. It gets a little sticky if she has a scan the same week, as that's a third hole in an arm, but not a big thing so far.
Good luck. Be aggressive on your treatment and keeping up with your scans. The immunotherapy can be very effective in keeping this beast at bay.
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- February 18, 2018 at 4:45 pm
Ted – you've gotten lots of good info from others so I just want to interject a little optimism. I had the same thing 15 years ago and I'm fine with no recurrence. Treatments today are so much better than they were. Hoping for the best for you and your wife. There's light on the other side of both your treatments.
Fen
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- February 20, 2018 at 1:28 pm
Hi Ted,
Like Fen said, you've gotten great information. I can just add similar experience. My husband had what appeared to be cyst for years, right on upper left back over should blade. He asked his regular doctor (when he saw one, he's old school Ukranian with a strong inherent distrust of the medical system in general) about it once and said just a cyst. Well it actually disappeared for a while. When we moved to Houston, he said one night it felt like he was sleeping on a golf ball and then my daugther noticed he had a huge nodule on his back. I didn't see it until we were in the surgeons office at MD Anderson and I burst into tears when I saw it, it was huge, he never showed it to me, went to the dermatologist without letting me know. Well the pathology report showed no epidermal component and no sign of regression. So they consider this a metastatic lesion from an unknown primary (I however find it hard not to correlate it with the previous growth on his back and some sort of regression going on). The nodule they removed was well encapsulated and has the NRAS mutation (i've researched what this means for outcomes and studies are inconsistent on this as well, some say good, some say bad). So technically he's never really been given a stage, on one of his patient reports it says 2b, Dr. Amaria said in our first consult after surgery and before his scans, she would stage it either 3c or 4. On the pathology report it says it appears to align with metastatic lesion but it could be primary, then the characteristics are Breslow depth 19 mm, etc etc . There was no skin component so like you, we exist in this weird gray area. In the end, for us, the stage hasn't mattered, my husband chose wait and watch (not my choice, but I respect his choice, Dr. Amaria was fine with that). She gave us the choice for more treatment, but my husband didn't even blink on eye, he saw treatment dollars and said no thanks. We are currently at 4 years for his scans and he also had fine needle aspiration and ultrasound of lymph nodes in the basin related to those taken out for SLNB (which was negative) first two years. However, I've done so much research on what Bubbles calls MUP, Metastatic Melanoma from an unknown primary. There are other terms such as Solitary dermal melanoma, cutaneous melanoma, etc. As a medical librarian who dealt with evidence-based research and best practices (I'll say that precision medicine is probably the most exciting thing coming down the pipeline, however), I tend to come back to this article for some reason: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673232/
I understand your anxiety about this weird cutaneous melanoma with unknown primary. Even the word "unknown' is in the description, which makes it harder since we so badly want to know the exact diagnosis, treatment. I can't speak to NIVO but it sounds like everyone is giving you the best advice possible, just thought I would share a similar story.
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- February 20, 2018 at 1:40 pm
Sorry, the link is bad in the other comment: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2673232/pdf/nihms-103877.pdf
Solitary Dermal Melanoma: Beginning or End of the Metastatic
Process? Ann Surg Oncol
. 2009 March ; 16(3): 578–584. doi:10.1245/s10434-008-0272-9.
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- February 20, 2018 at 2:41 pm
Another question; I meet with a surgeon on 4/12 to "clean up" my shoulder as I did not have clear margins. Does anyone know since I did have a clear PET/CT scan if they will recommend a sentinel node biopsy or should I expect that? Curious about that.
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- February 21, 2018 at 1:51 am
If I were going to have a wide excision, I would probably request a sentinel node biopsy. However, if your docs really think you are already Stage IV, I'm not sure what difference it would make. Having a positive node after an initial Stage I superficial lesion makes you Stage III with vastly different treatment and follow-up recommendations. If you are already Stage IV and about to start nivo…I'm not sure what difference a positive node would make. Hang in there. C
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- April 5, 2018 at 2:31 am
Hi Ted,
Our stories are somewhat similar. In my case I had what appeared to be a pimple like bump on my upper right arm. In December my dermatologist did a punch biopsy and it was diagnosed as an angio sarcoma. When I went to see my oncologist he had the pathologists review it and it was determined to be a melanoma. However, there was no evidence it was a primary so it is being categorized as metastatic and treated as stage 3. My PET-CT Scan and Brain MRI were clean. I had surgery the first week of February and they did a wide excision and a sentinel node biopsy. My lymph nodes were clean too, so no evidence of cancer there. We don't know where the primary might have been. My lower right arm possibly? Somewhere else?
I started my Nivo treatment this past Friday and will continue every other week for the next year. I feel good after the first treatment which makes me optimistic for the rest of the treatment. I know that side effects can happen any time along the way but I am not focusing on that.
Also my wife had a sarcoma removed a year ago May so we also are a couple that shares a cancer journey. She is doing well and has check ups/scans every three months.
Hope you are doing well. I would love to hear how things are going for you.
-Jim
Boston, MA
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