Quick background. I was diagnosed with stage 3 melanoma at 43 when a cyst like bump appeard on my hip that once removed turned out to be Melanoma. After removal scans showed NED. Oncologist in Florence SC followed up with opdivo adjuvant therapy for a year and afterwards the scan showed it had spread to liver and lungs. The largest tumor being abt 6 cm. Being BRAF+ my new Oncologist at Duke started Dabrafenib/Tram targeted combination 1 year ago. It successfully shrunk the tumors the largest now being 2cm which increased 1.6cm from the previous scan. She now wants to try Yervoy/Opdivo for 4 cycles 3 weeks apart. Is this common even though Opdivo seemed to have no effect the first time?
- March 8, 2021 at 2:36 pm
- March 8, 2021 at 5:46 pm
Sorry for all that you have been dealing with. Here’s my take – while some melanoma patients do well on targeted therapy for years – the general rule is that melanoma can learn to work around it. Therefore, it is often best to decrease the tumor burden quickly with targeted therapy, then quickly switch to immunotherapy. On top of that, we have many peeps on the forum who may not have responded to ipi or nivo alone – but when treated with the combo did very well. For something more than anecdotal data – there is this – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/how-to-deal-with-recurrence-on-or-after.html
This post deals with the issue you are facing with additional links to more articles within. Hope that helps and I wish you my best. celeste
ThreefittyParticipantI was a stage 3B adjuvant optivo recipient in a clinical trial in 2017. Also then progressed; spleen, stomach, neck in 1/20.
- March 10, 2021 at 8:32 pm
I went to the combo – didn’t know braf status at the time. Had a low tumor load and personally favored immunotherpy follow up. (getting my braf status turned out to be a continuing nightmare, but another story)
I seem to respond to yervoy. I got a fully clear scan. But then a “maybe spleen again”, followed by “no spleen, 100’s of subcutaneous + brain mets’. So I progressed after response, but then that fairly massive progression has showed some reversal after just one return to combo dose. I have the additional complication of serious side effects from yervoy, but it seems to work. Even my vitiligo seems to spread.
I have since tested as braf neg and nras pos which has a fairly poor comparative prognosis. The nature of my experience has even raised question as to whether the adjuvant optivo treatment wasn’t perhaps of some effect. It seems I’m alive at 4 years post diagnosis which is about 70% down the old nras mutation mortality curve that bottoms around 80%. Still feels like a coin toss – like we were the first lucky generation – but this uncertainty is what you get. I love yervoy and the colitis it induces, like the smell of napalm on melanoma in the morning.
Thanks for the response. Sounds pretty similar. Did you have any side effects with Opdivo alone or just the combination? I did the adjuvant therapy for a year with no side effects on Opdivo but I hear the combo is more toxic. I’m hoping they’re manageable.
- March 13, 2021 at 12:53 pm
jennunicornParticipantI originally had stage 3 as well and went on adjuvant Yervoy. After almost a year on that the melanoma was back, so my onc put me on Yervoy/Opdivo combo and after completing the 4 combo infusions and the many months of Opdivo only infusions, the last tumor shrunk and had surgery to remove the stubborn bit. That was over 3 years ago, I have been NED ever since.
- March 13, 2021 at 7:47 pm
soonerjenn14ParticipantHey, you’re at Duke and I’m at UNC!! My story – was diagnosed with what we thought was stage 4 last April, and my oncologist started me on Opdivo. I had a great response for a while, lymph nodes shrank down to .5cm and luckily what we thought were bone mets never showed up again and after MRI/liver biopsy we think what was thought to be a liver met is now deemed non-cancerous (although the jury still seems to be out according to my oncologist). Unfortunately, in January I stopped responding and my lymph nodes started growing again. I went on the Opdivo/Yervoy combo for 2 cycles, but didn’t seem to work for me – lymph nodes continued to grow, now 3 cm and 1 cm. I had an appointment this last Friday and we decided to stop the combo and I’m moving to targeted therapy this week, Braftovi+Mektovi since I am BRAF+.
- March 14, 2021 at 11:21 am
I hope the combo works for you! It’s tougher than Opdivo alone, at least for me it was. The rash is ridiculous, all over me including the tops of my feet. I haven’t had nausea but do experience fatigue, which I really didn’t have on just Opdivo alone. I know none of this really answers your question about whether or not it is common to try the combo if Opdivo didn’t work the first time, but for me it was worth a shot. I’m hopeful the targeted therapy will work for me, we’re going to try it for a couple of months and then remove the lymph nodes and what remains of my original tumor, and then I’ll remain on targeted therapy as adjuvant treatment. Best of luck to you and keep us posted on how it goes! #cancersucks
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