› Forums › General Melanoma Community › Will it return…
- This topic has 9 replies, 6 voices, and was last updated 4 years, 10 months ago by
doragsda.
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- July 3, 2019 at 3:12 pm
“I seem to remember something like if you’re going to recur after keytruda, you’ll do it sooner (within 2 years) rather than later. But I could be wrong.”
Quote from a previous post.
This has entered my mind almost daily. The ifs, ands and what if and when…….
My husband wants no more scans. Stopped Opdivo/Yervoy after three treatments because of side effects. Diagnosed stage 4 Feb. 2017 and last treatment was June 2017. He was having scans every three months until the last one in March of this year and next one (got to skip to six months) is scheduled for October. All scans have shown tumors gone with only one very small one remaining.
No more scans. I don’t know what to think or say. He says no more treatment, so why do the scans. Well–I want to know if it is returning. I can see his point to a certain degree but I would like to hear “clean scans” and not have to wonder when (if?) things take a turn for the worse.
Thanks for any advice.
Jim’s wife
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- July 3, 2019 at 5:09 pm
Hello, I can’t answer your question about when and if melanoma will return. Melanoma is a mystery, I can say that I have heard many stories of people remaining NED for many years! Ugh the dreaded scans, I totally understand why your husband doesn’t want to continue the scan schedule. I used to beg my husband to tell his oncologist that he didn’t want all those scans, I was convinced the scans were doing more harm than good. Thankfully my husband didn’t listen to me. A little more than 2 years into being NED from stage 3b a routine scan showed a small tumor in his lung. I am glad that my husband continued with his check ups, if he had not that one small tumor could have become something much worse. He was treated with Opdivo and radiation. The tumor is gone and I hope and pray it will stay that way. Scans are scary and I am the absolute worst when it is scan time, but I believe they are an important part of fighting melanoma. Wishing you and your husband the best. -
- July 3, 2019 at 5:20 pm
There is a small risk from the radiation of a scan. I have had 15 PET/CT scans. The cumulative radiation from them is significant, but the information they provide is used in managing my treatment for melanoma. If your husband is positive that he will never accept treatment for melanoma, he may as well skip scans. Some people want to know whether they have a health problem. Other people do not want to know this. I do not want to know whether I have prostate cancer. So, I decline tests for it. Prostate cancer usually grows slowly. Melanoma, a heart attack or stroke would probably kill me, before prostate cancer spreads. -
- July 3, 2019 at 5:37 pm
Melanoma is unpredictable and a BE-ATCH! Melanoma treatment and monitoring is not absolute and is exceedingly personal. I can only give you some info on the topic you have addressed.There is this report on outcomes after stopping immunotherapy based on reports from ASCO 2017: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-outcomes-after-stopping.html
There is this report, also from 2017 regarding ipi vs nivo as an adjuvant treatment, but ends with a discussion with my oncologist (Jeff Weber) about recurrence: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/09/nivo-better-than-ipi-as-adjuvant.html
I write,
“… I am asked at least weekly by someone via email, MPIP, or my blog…“So, when will I be safe? If I make it out 1 year (2, 3, etc) I’ll be free of melanoma, right????”
That is the zillion dollar question if you are lucky enough to have made it this far, isn’t it? Sadly, it is one that we do not yet have an answer to….though we ratties are doing our best to give you some great numbers with the treatments at hand.
Here is one such discussion with references to other arms developed in my study: 9 months after Nivolumab trial…stats, f/u, what we learned….
I have listened to B and Weber discuss Kaplan Meier curves until I thought my brain would develop ANOTHER tumor!!! B arguing for 2 years being the point they flatten out….Weber hedging his bets and noting 3 years as that magical point. Bottom line: Every day out is one day better. Researchers agree now, pretty much across the board, that one year out with no disease is great, 2 years out is amazing and 3 years out there is a plateau which may mean….a CURE!!!! We shall see. Melanoma is a sneaky bitch. However, every day forward is another day. Another day to live and enjoy. Another day down the road to a cure….whether via current treatments already attained…or even better ones that may save even more dear ones.”
Not sure how much this helps you, but I wish you my best. Celeste
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- July 3, 2019 at 6:06 pm
Guess it’s just me, but I don’t mind the scans at all. I figure either they find something, in which case I’d want to know, or they don’t, which is good news. I didn’t even mind the infusions, IF they could get me hooked up in reasonable number of tries. I think the worst was four attempts, and even that wasn’t that bad physically or pain-wise. I think it’s mostly just mental. Just me, but I’d definitely continue the scans. -
- July 4, 2019 at 3:33 am
Is his current decision to refuse any future treatment of a potential recurrence based on the side effects he suffered with the Opdivo/Yervoy combo?If so, he should consider that treatment with Opdivo alone usually presents far fewer and less severe side effects. In addition there are other therapies, and new ones are being developed as I type this. My point is that I think the time to make the decision whether to seek treatment is when it needs to be made, as making it years in advance may result in needless problems that could potentially be resolved with few, and possibly no, side effects. My wife went from stage IIc to stage IV with near fatal brain mets in the 6 month space between scans. We’re not at two years after that stage IV diagnosis and she’s doing great. I would want to give myself every possible advantage against this aggressive and persistent disease, and regular scans are definitely an advantage.
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