Heading back to our oncologist tomorrow for a where do we go next discussion. My husband has Stage 4 melanoma that has mets to random locations in the upper skin area, an oligometastisis presentation. He is Wild Type. Had 42 rounds of Keytruda, then watchful waiting, then 3 rounds of Yervoy, which toasted his GI tract. He had an infusion of Remicade (usually used to treat Crohn's Disease) last week to try to get his gut healed up. He's had 3 days without GI distress for the first time in 3 months, so hopefully this is helping. Going to try stepping down from 60-40 mg prednisone to see if he can tolerate that.
He has a spot on the shoulder that is black dots of melanoma slowly spreading. Discussion is to radiate this, surgical excision, or if combination of this and two other distant pencil eraser sized tumors plus his genotype/ oligometastisis qualifies for a clinical trial.
Anyone else on this forum with oligometastisis presentation have experience to share? We are fortunate to live in the DC area with outstanding melanoma treatment options, several clinical trial hospitals, and access to NIH.
peace,
missy
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Missy, sounds like good news that your husband is off the Keytruda, was that hard to let go of? My husband is 13 months on Opdivo, and I don’t look forward to letting that go. My husband only had 2 treatments with the Yervoy, he couldn’t handle it either, although it didn’t totally mess up his GI tract, they almost gave him remicaid, but 1st upped his dose of steroids and that worked for him. I’m so glad to hear that the remicaid us helped your husband. What does ogliometastisis mean? I’m sorry some of these words I still don’t understand. We may be dealing with it and I don’t know. My husband has cancer in his bones, lungs, thyroid,lymph node, peritoneal cavity, and his liver is full. I will be praying for your husband to be able to lower his steroids. It took us a year to get my husband off of the steroids, and I went much slower than the Dr suggested. He got all the way down to 10mg 4 times and then couldn’t go lower, so I literally too it very slow. Starting at 80 mg, Finally down to 9, for 2 wks, 8, for 2 wks, etc until we got down to 1mg. And it worked it has been 6 weeks with no steroids. I personally would suggest going much slower than what the Dr’s say, there is no rush, you want him to be comfortable and not set anything off, it’s such a balancing act, hopefully he will be able to come down. My husband does have pain and inflammation, but he is dealing with it ok. He is still on morphine, but trying to wean off that which is scary. We are trying 1 15mg pill in the AM, and talking a couple of 4mg Dillaudid in the evening, it’s a little tough on him, but he really wants to try. My husband does have melanomas & squamous still appearing on the skin, but they always excuse them, he has never had radiation. How does that work for your husband? Did your husband ever take Taf/Mek? My husband did that for 9 months, and now just have him on the Opdivo.
From a stage 3C point 3 years ago, it was anxiety producing when we approached the 24 month mark with Keytruda as it had helped and we worried that without it what would happen? the in-transit metastasis on his head had stopped forward progress and all died off. Now all you can see is very faint "cancer dust" remnants on his head. All of his Pet and Ct scans have showed no major organ involvement internally.
Then he had a distant tumor show up at month 23 on his leg very close to the surface of the skin (original site was on the top of his head). He had surgical excision with clean margins on the leg, continued on Keytruda, had a recurrence on the leg excision site!, and had it cut out again with clean margins. No additional melanoma has shown up there since so we went into watchful waiting in early 2018.
Then he had another small tumor show up on his belly near the belly button, again just under the skin. Has grown super slowly and is about the size of 2 eraser heads. Then he got little tumor (now several have colonized) on the right shoulder, which has shifted of late to being very navy/black in color, raised and expanding. He had this show up as we started Yervoy, and another on the right rear shoulderblade under the skin. These pretty well describe metastasis: Oligometastatic (OM) disease represents an intermediate stage of progression between fully systemic metastasized disease and localized tumor burden. Clinical data is emerging that patients with OM are potentially curable, in part because of advances in the precision of radiation therapy treatment, and in part because of advances in the efficacy of immunotherapy on low burden systemic disease.
With melanoma that is not advancing to major organs, but is "finding sanctuary" in the skin, the approach is to see if systemic approach like immunotherapy can halt progression, or if you add in an injectible like TVec (a modified herpes virus), or radiation (which sometimes has this weird effect of additionally jumpstarting an immune response with what otherwise was a "cold tumor" that was resisting the immunologic, and can create a systemic boost to other tumors that you don't radiate... crazy science here, but this is documented in maybe 10-15% of these cases), or use the old standby to cut out these tumors.
Because of the location right on the shoulder for my husband, we learned today that a surgical approach may be more complicated and may require a skin graft and plastic surgeon to partner with the oncology surgeon. Read: gotta to see the surgeon in person to get details. Primary recommendation from our oncologist was to use radiation since it is relatively small area and very close to the surface, and he might get this somewhat rare extra boost that could impact the belly and shoulder tumors. But he has to get off the prednisone first before any next steps can happen.
Today is day two in dropping from 60-40mg, so I appreciate the take it slow approach. We are keeping the appointment on the books for another round of remicade if needed for next week if the GI symptoms roar back. He is hungry, shaky and nauseous pretty much all day long on the steroids. But he has never been in any pain, except from surgeries.
When we went through second opinion consultations this year, we got mixed input regarding use of Tek/Mek for Wayne because he is wild type. At Columbia, where the researcher is with the longest history in that part of melanoma Tek/Mek specialty saw him, he said he didn't believe it would be helpful because he doesn't have the V600 mutation, and could actually create other cancer effects. So for now that is off the table for us, and his "tumor burden" (number, type, size, impact) is considered low compared to your situation, for example, so it could also be an over-reach for my husband.
Are you all using a palliative care team to help you wend your way through decisions, Michele? How helpful has that been? I'm going to a training by a cancer palliative care specialist in December.
Remicade didn't work at all for my son after his 3rd opdivo/yervoy treatment. Once he came home on hospice and went off the iv fluids that's what ultimately stopped the GI distress.
Nick had whole brain radiation. His surface spots were everywhere. I noticed at the end, the spots had reduced on the outside, but we're still too numerous to count.
My thoughts and prayers are with you and your husband.
Thanks for sharing your experience with Remicade, Vflowers.
We are coming up on the 2 week mark post Remicade for GI side effects from Yervoy, and it appears to be working for my husband. He has been able to step down in prednisone, and today is dropping by another 1/2 the dose. He has been gradually adding in other food and tolerating it. He even had a salad for the first time in months on Saturday!
He is still weak and shaky, and it's unclear how much is the prednisone itself, and how much may be withdrawal from prednisone, but we seem to be going in the right direction for this in his case currently.
Consult for radiation vs surgery for the shoulder melanoma in the next 2 weeks. He can't have either until he is off the prednisone.
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