› Forums › General Melanoma Community › Pseudo Progression While on Nivo(Opdivo). Do you continue?
- This topic has 10 replies, 7 voices, and was last updated 5 years, 12 months ago by Bubbles.
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- April 1, 2018 at 12:57 pm
Hello again everyone. Well, after seven months of clear scans and very minor side effects, I've got a new mutant to cut out. My surgeon thinks it's fully resectable and it's less than two inches away from the edge of the WLE from my first surgery.
I do not have details about ulceration, mitosis rate and all that yet, but I'm mainly curious about continuing Nivo if there was a progression. I know it's somewhat cumulative, so the more you can take the better, but when there's already been new progression, is it time to jump ship to a new drug? I'm getting treated at Vanderbilt, and they have a tumor board where they decide what treatments to recommend, and I have not heard their opinion yet, and probably won't until after the surgery. I have a feeling that my oncologist is leaning towards just continuing on Nivo for now since I've been handling it well.
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- April 1, 2018 at 6:04 pm
Hey, I’m in the same boat and am wondering the same thing. Having a positive hilar node resected in 2 weeks, oncologist has not mentioned switching from opdivo, which i’ve been on for several months. I will be watching this thread, as well as double checking with onc. Let me know what you find out and good luck!-
- April 2, 2018 at 9:54 pm
Good luck to you too. I'll update after the surgery.
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- April 2, 2018 at 1:02 pm
Obviously, you're going to get the best advice from your docs, and the mindtrust of the tumor board….. However, I thought I'd toss my personal experience with Keytruda in the ring. I began Keytruda the first week of Nov 2014. It worked quite well to clear the subQ's and lung lesions that had not been removed, but I did have an additional round of gamma in Dec 2014. After that point, I was clear of any NEW metastsis until February 2016, when a new bit of mela-meat reared showed up in the brain again. I freaked. Wasn't sure where we'd have to go for clinical trials. We gamma zapped the bit, and I continued on Keytruda, as it seemed to have worked so well and with minimal side effects to that point. I continued the infusions for 5 more months before pancreatitis and arthritis caused us to "take a break". 20 months of infusions, with only that one little "WTF" popping up. I stopped the Keytruda in July 2016 and have remained clear. It's possible that your doc could surgically remove the new bit of beast, and then continue the Nivo with continued success. Sometimes a little oddball mutant slips past the goalie for inexplicable reasons. It may not quite be time to "hit the panic alarm" and change the meds…. although there are some interesting new combos being tried, so the tumor board and your docs may want to give you a go that packs a new additional punch. Best of luck to you moving forward, with hopes that this new growth is an isolated son-of-a-gun that can be swiftly dealt with.
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- April 2, 2018 at 9:55 pm
Thanks for sharing that. Everyone's story is different, but generally speaking, Melanoma treatment is much better than I expected when I was diagnosed. Hopefully it's just a winding road to NED.
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- April 2, 2018 at 6:34 pm
Dumb question, but is this new progression and is this the type of thing that nivo/keytruda/ipi guard against? I mean, I've read here about nivo reducing mets in the lung or brain or whathaveyou, but would it work on a melanoma that was still on the skin? I guess you wouldn't know, since they always cut it out, but would it stop – for example – a new, unrelated melanoma from popping up somewhere else on the body? I would have thought not, but I obviously have no idea. Or – in this case, assuming that this is related to the original occurence – would nivo stop melanoma from moving in/along the skin?
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- April 2, 2018 at 9:59 pm
I doubt I'll get an answer about it being a new progression. On the original WLE, the margins were clear, but it was so deep so who knows. I've wondered about the same thing you are talking about. Most of the times you see people describe their experience with Nivo, it's people who've had internal tumors; probably because they are the ones most likely to be approved by insurance.
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- April 3, 2018 at 12:00 am
I asked my oncologist if I had to keep getting my skin checked for melanoma even though I was doing the 12 month opdivo plan. He said, "Absolutley!" The reason is, is that some skin melanomas aren't hooked up to your blood system and thus never get the medicine. At least that is what he said. He said that it was possible to get melanoma a second time by a new mole after treatment that hadn't been hooked up to the blood system.
I'm not a doctor and take it for what it is worth, but now I have to keep seeing a dermatologist.
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- April 2, 2018 at 7:39 pm
Hey there Billy,
Like the others, I say listen to your docs. but this is my experince–
I also had 3 mel mutants pop up after 20ish rounds of Pembro and watching Pembro shrink every other tumor I had. I was quite disappointed and thinking that I had run my course with Pembro and now it was time to move on to a different approach.
But right at that time I was dx'd with non-small cell lung cancer, so mel had to take a back seat while I opened another front in the war and gave my attention to NSCLC. So I had the mela-meat removed surgically. While that made me NED for Mel, I was very worried that without any Mel treatment it would come back big and bad (and I knew the NSCLC treatment wouldn't do anything to Mel).
Now I'm through with NSCLC treatment and haven't seen Mel's ugly face since the surgeon evicted him last June. Ned for Mel! This was not what I expected, but I'm so grateful! Oh and I'm also NED for Larry the Lung Cancer, too.
So I guess I'm just adding this to say that surgery and wait might not be as crazy of an idea as it sounds.
Shalom,
Julie
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- April 2, 2018 at 10:03 pm
Thanks Julie. I hope to have an outcome even nearly as great as yours. Beating two cancers is amazing. Of course, we have little say in how our body responds, so I always feel weird when people tell me I'm doing well, but still amazing.
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- April 4, 2018 at 12:34 pm
Hey Billy,
Sorry you are dealing with this. Here is a report I put together today that may interest you:
Hang tough. I wish you my best from Chatt-town! celeste
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