› Forums › Cutaneous Melanoma Community › Disappearing Moles After Immunotherapy
- This topic has 21 replies, 6 voices, and was last updated 9 years, 8 months ago by
Colleen66.
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- August 20, 2014 at 11:04 pm
I thought I'd report a phenomenon I've experienced over the past year or so which others may find interesting or have even seen yourselves. If you read my profile or have seen my other posts, you’ll see that I've had three different immunotherapies in the past four years: high-dose IL-2 and TIL cell therapy (at NIH in 2010-11) and Yervoy (at my home cancer hospital in Spring 2013). Even prior to Yervoy, I started to notice very mild vitiligo in my hands, feet, and neck — mild enough that you might not notice it if I didn't point it out, but knowing my skin as well as I do now, I can see it. My doctors have always been pleased to see it and the incidence of vitiligo and immunotherapies are pretty well documented elsewhere on this forum, but this isn't about vitiligo per se.Much more dramatic for me has been the complete disappearance of many moles all over my body. I was never officially diagnosed with any sort of dysplastic nevi syndrome or disorder but have always had a significant number of moles since I was a kid, too many to count and always something we knew we had to keep an eye on. I never had a dermatologist say flat-out that I should have a photographic mapping, even after I was diagnosed with melanoma; I asked a couple of times if they recommended it, and they were always borderline as to whether I needed to or not. In hindsight, I probably should have just done it, but ultimately, my primary disease didn't present as an existing mole, but a new reddish bump that looked more like a cyst and my dermatologist was pretty sure was a basal cell carcinoma until the pathology report came back as melanoma. Just pointing out that the photographic mapping wouldn't have done anything to help me with an earlier diagnosis, but I still wish I had done it. I had a lot of moles of varying shapes and sizes, especially on my back where they're harder to watch, but all over my body, really. Worth noting here that since my diagnosis, all of my skin checks, typically every six months, are with the dermatologist at my cancer hospital, which is an NCI-designated Comprehensive Cancer Center. At each of my skin checks, there has often been one mole that would look “a little odd” and which my dermatologist would biopsy. They usually came back as mildly to moderately atypical, sometimes we’d need to do a wider excision and sometimes the margin on the biopsy was sufficient. At Stage IV for four years, I don't get too worked up about these things any more. Some of you can probably relate that the ABCDE criteria aren't all that helpful to some of us, they all look a little odd, with the most significant indicator being moles that are either changing (the “C”) or look different than any of our other already odd-looking moles. My dermatologist basically said that pretty much any of my moles we biopsied would likely come back as atypical to some degree.Over the past year especially, though, while the vitiligo has been relatively stable and hasn't changed or progressed muc), we've noticed that many of my moles have completely disappeared. By many, I'd say about 90% of them (this is where a good mapping would have come in handy; instead, I've compared now to pictures of my face or arms, unfortunately no good pictured of my back) are gone and many others are faded. Where they've disappeared or faded, they haven't been replaced by vitiligo spots of no pigment, they've just returned to my "normal" looking skin. I don't know if this is also classified as vitiligo or has another name… "nevi depigmentation"? Regardless, like the vitiligo, it's something my medical oncologist was particularly pleased to see when I showed him a picture a few months ago that was a close-up of my arm from a few years ago, just before I had TIL, compared to today.We know that this and the vitiligo are no guarantees of continued response of any kind, but are certainly not bad things in the context of immunotherapy; the reason they can occur in the first place with immunotherapy is pretty clear. We don't know if we can attribute this to the TIL cell therapy or Yervoy, perhaps it's both. We started to see the vitiligo before I had Yervoy, but didn't notice the disappearing moles until the past year or so, but it may have started earlier. While both my medical oncologist and dermatologist have seen vitiligo before, they haven't seen this "disappearing mole" trick, at least to the degree that it's so obvious with me. Frankly, it makes my skin checks, both self-exams and with the dermatologist, quite a bit easier, as I have many fewer existing moles that I don't have to track and wonder if they have changed. I still have to be on the lookout for new ones, certainly, but that's become a simpler task now. I also imagine there may be an increased risk of one of these disappeared moles becoming an amelanotic melanoma, but again, I'm still vigilant for new irregularities — as I said earlier, despite a large number of moles, my original primary didn't present as an existing mole that started to change.I thought it was worth sharing, and am curious if anyone else has seen this with their own moles?Joe
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- August 20, 2014 at 11:13 pm
I wouldn't call disappearing moles vitiligo, but "regression". Considered a normal immune process, it can and does happen in normal moles and melanoma moles. I've never had any type of immunotherapy, but I have had moles regress. As long as they weren't concerning to begin with, I am fine with them disappearing.
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- August 20, 2014 at 11:13 pm
I wouldn't call disappearing moles vitiligo, but "regression". Considered a normal immune process, it can and does happen in normal moles and melanoma moles. I've never had any type of immunotherapy, but I have had moles regress. As long as they weren't concerning to begin with, I am fine with them disappearing.
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- August 20, 2014 at 11:13 pm
I wouldn't call disappearing moles vitiligo, but "regression". Considered a normal immune process, it can and does happen in normal moles and melanoma moles. I've never had any type of immunotherapy, but I have had moles regress. As long as they weren't concerning to begin with, I am fine with them disappearing.
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- August 21, 2014 at 1:52 am
Yes, I haven't been concerned about it, either — as I said, if anything it's made skin checks much easier — just making the observation if anyone else has a similar experience. I too have had other moles go away on their own prior to my diagnosis, especially after I turned 30 or so, but the extent to which it's happened post-treatment has been dramatic; while it is a normal immune process, it has been greatly accelerated by at least one of the immunotherapies I've received.
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- August 21, 2014 at 1:52 am
Yes, I haven't been concerned about it, either — as I said, if anything it's made skin checks much easier — just making the observation if anyone else has a similar experience. I too have had other moles go away on their own prior to my diagnosis, especially after I turned 30 or so, but the extent to which it's happened post-treatment has been dramatic; while it is a normal immune process, it has been greatly accelerated by at least one of the immunotherapies I've received.
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- August 21, 2014 at 1:52 am
Yes, I haven't been concerned about it, either — as I said, if anything it's made skin checks much easier — just making the observation if anyone else has a similar experience. I too have had other moles go away on their own prior to my diagnosis, especially after I turned 30 or so, but the extent to which it's happened post-treatment has been dramatic; while it is a normal immune process, it has been greatly accelerated by at least one of the immunotherapies I've received.
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- August 21, 2014 at 2:32 am
Joe, interesting post. I've recently noticed that a number of my moles and freckles have lightened significantly (overall, I don't have that many). I had 3 infusions of ipi from December through February. Since ipi, my scans have been stable, but I'm also on the combo. The lightening has definitely been more recent. I searched this forum and did a more general Google search (hoping to find that this was an indication of a good ipi response). Didn't find much on the topic.
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- August 21, 2014 at 3:43 am
My husband had 4 infusions of 10 mg ipi. He had many of his "age"spots disappear as well as developing vitiligo mainly on his upper back and arms. He unfortunely had liver mets right after the induction. He had ablation (microwave) in May and is now NED. Scans in 2 weeks. Hoping that the skin changes are a good sign and that the ipi was a delayed response .
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- August 21, 2014 at 3:43 am
My husband had 4 infusions of 10 mg ipi. He had many of his "age"spots disappear as well as developing vitiligo mainly on his upper back and arms. He unfortunely had liver mets right after the induction. He had ablation (microwave) in May and is now NED. Scans in 2 weeks. Hoping that the skin changes are a good sign and that the ipi was a delayed response .
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- August 21, 2014 at 3:43 am
My husband had 4 infusions of 10 mg ipi. He had many of his "age"spots disappear as well as developing vitiligo mainly on his upper back and arms. He unfortunely had liver mets right after the induction. He had ablation (microwave) in May and is now NED. Scans in 2 weeks. Hoping that the skin changes are a good sign and that the ipi was a delayed response .
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- August 21, 2014 at 2:32 am
Joe, interesting post. I've recently noticed that a number of my moles and freckles have lightened significantly (overall, I don't have that many). I had 3 infusions of ipi from December through February. Since ipi, my scans have been stable, but I'm also on the combo. The lightening has definitely been more recent. I searched this forum and did a more general Google search (hoping to find that this was an indication of a good ipi response). Didn't find much on the topic.
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- August 21, 2014 at 2:32 am
Joe, interesting post. I've recently noticed that a number of my moles and freckles have lightened significantly (overall, I don't have that many). I had 3 infusions of ipi from December through February. Since ipi, my scans have been stable, but I'm also on the combo. The lightening has definitely been more recent. I searched this forum and did a more general Google search (hoping to find that this was an indication of a good ipi response). Didn't find much on the topic.
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- August 21, 2014 at 4:22 am
Hi Joe,
Interesting post. I have moles just like yours. Far too many to count and almost all of them atypical in some way. Kept an eye on them and then one day in 2010 a red eraser type protruding mole showed up on my calf overnight (I shave my legs daily so it truly was overnight). Went to my GP (bad idea) immediately who said it was a wart and just something that happens as we get older. Left it alone. A few weeks later, it disappeared overnight. Never got it biopsied. Then in 2012 I was stage IV with melanoma in my lung. No known primary. I will always wonder about that weird red mole/wart from 2010.
But in my twenties my body would randomaly reject moles on its own. They would literally fall off. Perfectly normal skin underneath. No bleeding or scabbing. It didn't happen often, but it did happen from time to time. I figured my immune system was doing its job and rejecting moles it didn't like. I guess my immune system just wore out and gave up, hence my current Stage IV status. Once I start treatment, I'll be on the lookout for disappearing moles again. Thanks for the interesting post.
Maggie
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- August 21, 2014 at 4:22 am
Hi Joe,
Interesting post. I have moles just like yours. Far too many to count and almost all of them atypical in some way. Kept an eye on them and then one day in 2010 a red eraser type protruding mole showed up on my calf overnight (I shave my legs daily so it truly was overnight). Went to my GP (bad idea) immediately who said it was a wart and just something that happens as we get older. Left it alone. A few weeks later, it disappeared overnight. Never got it biopsied. Then in 2012 I was stage IV with melanoma in my lung. No known primary. I will always wonder about that weird red mole/wart from 2010.
But in my twenties my body would randomaly reject moles on its own. They would literally fall off. Perfectly normal skin underneath. No bleeding or scabbing. It didn't happen often, but it did happen from time to time. I figured my immune system was doing its job and rejecting moles it didn't like. I guess my immune system just wore out and gave up, hence my current Stage IV status. Once I start treatment, I'll be on the lookout for disappearing moles again. Thanks for the interesting post.
Maggie
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- August 21, 2014 at 8:09 pm
Thanks Maggie. My original primary presented like the one you were suspicious may have been your primary, except on my back. I'd always had all of these moles and this one was a red bump that looked more like a wart. I was at my GP for something completely unrelated (pulled my calf muscle overdoing it at the gym) and asked him to take a look at the "thing" on my back. He didn't think it was anything to worry about, but that it wasn't going to just go away on its own and I should see my dermatologist. I scheduled with my dermatologist who during the exam was pretty sure it was basal cell carcinoma (it definitely looked like BCC compared to the scary pictures on the wall of every dermatology office 😉 She biopsied it, said she'd call in a couple of weeks with the results and then, assuming it was BCC, I'd see a surgeon to remove it all and be done with it… we were on vacation (at the beach, of all places), when we got the call that it was melanoma, and after appointments and tests, two weeks later, we knew it was Stage IV.
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- August 21, 2014 at 8:09 pm
Thanks Maggie. My original primary presented like the one you were suspicious may have been your primary, except on my back. I'd always had all of these moles and this one was a red bump that looked more like a wart. I was at my GP for something completely unrelated (pulled my calf muscle overdoing it at the gym) and asked him to take a look at the "thing" on my back. He didn't think it was anything to worry about, but that it wasn't going to just go away on its own and I should see my dermatologist. I scheduled with my dermatologist who during the exam was pretty sure it was basal cell carcinoma (it definitely looked like BCC compared to the scary pictures on the wall of every dermatology office 😉 She biopsied it, said she'd call in a couple of weeks with the results and then, assuming it was BCC, I'd see a surgeon to remove it all and be done with it… we were on vacation (at the beach, of all places), when we got the call that it was melanoma, and after appointments and tests, two weeks later, we knew it was Stage IV.
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- August 21, 2014 at 8:09 pm
Thanks Maggie. My original primary presented like the one you were suspicious may have been your primary, except on my back. I'd always had all of these moles and this one was a red bump that looked more like a wart. I was at my GP for something completely unrelated (pulled my calf muscle overdoing it at the gym) and asked him to take a look at the "thing" on my back. He didn't think it was anything to worry about, but that it wasn't going to just go away on its own and I should see my dermatologist. I scheduled with my dermatologist who during the exam was pretty sure it was basal cell carcinoma (it definitely looked like BCC compared to the scary pictures on the wall of every dermatology office 😉 She biopsied it, said she'd call in a couple of weeks with the results and then, assuming it was BCC, I'd see a surgeon to remove it all and be done with it… we were on vacation (at the beach, of all places), when we got the call that it was melanoma, and after appointments and tests, two weeks later, we knew it was Stage IV.
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- August 21, 2014 at 4:22 am
Hi Joe,
Interesting post. I have moles just like yours. Far too many to count and almost all of them atypical in some way. Kept an eye on them and then one day in 2010 a red eraser type protruding mole showed up on my calf overnight (I shave my legs daily so it truly was overnight). Went to my GP (bad idea) immediately who said it was a wart and just something that happens as we get older. Left it alone. A few weeks later, it disappeared overnight. Never got it biopsied. Then in 2012 I was stage IV with melanoma in my lung. No known primary. I will always wonder about that weird red mole/wart from 2010.
But in my twenties my body would randomaly reject moles on its own. They would literally fall off. Perfectly normal skin underneath. No bleeding or scabbing. It didn't happen often, but it did happen from time to time. I figured my immune system was doing its job and rejecting moles it didn't like. I guess my immune system just wore out and gave up, hence my current Stage IV status. Once I start treatment, I'll be on the lookout for disappearing moles again. Thanks for the interesting post.
Maggie
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- August 22, 2014 at 1:01 am
I had Interferon threatment only. Developed vitiligo 1 1/2 years later and have moles on my back fading. Not going white but just fading. I've also seen the vitiligo "eat" a few moles on my hands. Like your Onc., Mine is very excited at this development.
Colleen
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- August 22, 2014 at 1:01 am
I had Interferon threatment only. Developed vitiligo 1 1/2 years later and have moles on my back fading. Not going white but just fading. I've also seen the vitiligo "eat" a few moles on my hands. Like your Onc., Mine is very excited at this development.
Colleen
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- August 22, 2014 at 1:01 am
I had Interferon threatment only. Developed vitiligo 1 1/2 years later and have moles on my back fading. Not going white but just fading. I've also seen the vitiligo "eat" a few moles on my hands. Like your Onc., Mine is very excited at this development.
Colleen
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Tagged: cutaneous melanoma
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