› Forums › General Melanoma Community › Metastatic Melanoma and Vitiligo
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sweetaugust.
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- June 15, 2014 at 5:37 pm
Hi Warriors.
I'm stage 3b and 1 1/2 years out from surgeries and 1 month of HD Intferon. I am currently stable with only 2 small, mets in my lung ( they have been stable since a year ago April).
I am developing Vitiligo on my hands and wrists. I noticed some small pigment changes some months ago but nothing I would have connected it to Vitiligo. It has spread since then and is now obvious what is going on. Even though my skin is already very pale it is still quite noticible. I will be making an appointment with my Derm on Monday or possibly just go straight to Oncologist????
This is what I have read so far about the connected between the two conditions.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861199/
Anyone have this happen or any thoughts or advice for me?
Thanks,
Colleen
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- June 15, 2014 at 6:21 pm
Some patients who have received immunotherapy treatments, including ipilimumab, anti-PD-1's, IL-2, and TIL, have reported the appearance of vitiligo to varying degrees. Interferon, too, is immune-related and also probably included in that list of treatments that may result in some vitiligo. The article you reference discussed the onset of vitiligo in individuals who haven't received immunotherapies for melanoma, sometimes eve before the diagnosis of melanoma. But we know now that melanoma can often be sensitive to an immune response, whether innate to the individual or with extra assistance from the various immunotherapy methods. From the article:“The relationship between malignant melanoma and vitiligo-like depigmentation is thought to be the consequence of the dualistic immune-mediated response against antigens shared by normal melanocytes and melanoma cells.”In other words, the immune system can respond to normal melanocytes or melanoma cells similarly, so the appearance of vitiligo (the immune system attacking normal melanocytes) can be correlated to a response by the immune system (with or without immunotherapy treatments) to melanoma. Long story short, vitiligo is often viewed as a good thing, not every patient will experience it, but when they do, the doctors are usually pleased. I've had TIL, IL-2, and ipilimumab and have some vitiligo on my hands, feet, neck, and torso. It's not extremely noticeable because I'm pretty pale these days 😉 but it is definitely present, and my doctors are always happy about to see it.Joe -
- June 15, 2014 at 6:21 pm
Some patients who have received immunotherapy treatments, including ipilimumab, anti-PD-1's, IL-2, and TIL, have reported the appearance of vitiligo to varying degrees. Interferon, too, is immune-related and also probably included in that list of treatments that may result in some vitiligo. The article you reference discussed the onset of vitiligo in individuals who haven't received immunotherapies for melanoma, sometimes eve before the diagnosis of melanoma. But we know now that melanoma can often be sensitive to an immune response, whether innate to the individual or with extra assistance from the various immunotherapy methods. From the article:“The relationship between malignant melanoma and vitiligo-like depigmentation is thought to be the consequence of the dualistic immune-mediated response against antigens shared by normal melanocytes and melanoma cells.”In other words, the immune system can respond to normal melanocytes or melanoma cells similarly, so the appearance of vitiligo (the immune system attacking normal melanocytes) can be correlated to a response by the immune system (with or without immunotherapy treatments) to melanoma. Long story short, vitiligo is often viewed as a good thing, not every patient will experience it, but when they do, the doctors are usually pleased. I've had TIL, IL-2, and ipilimumab and have some vitiligo on my hands, feet, neck, and torso. It's not extremely noticeable because I'm pretty pale these days 😉 but it is definitely present, and my doctors are always happy about to see it.Joe -
- June 15, 2014 at 6:21 pm
Some patients who have received immunotherapy treatments, including ipilimumab, anti-PD-1's, IL-2, and TIL, have reported the appearance of vitiligo to varying degrees. Interferon, too, is immune-related and also probably included in that list of treatments that may result in some vitiligo. The article you reference discussed the onset of vitiligo in individuals who haven't received immunotherapies for melanoma, sometimes eve before the diagnosis of melanoma. But we know now that melanoma can often be sensitive to an immune response, whether innate to the individual or with extra assistance from the various immunotherapy methods. From the article:“The relationship between malignant melanoma and vitiligo-like depigmentation is thought to be the consequence of the dualistic immune-mediated response against antigens shared by normal melanocytes and melanoma cells.”In other words, the immune system can respond to normal melanocytes or melanoma cells similarly, so the appearance of vitiligo (the immune system attacking normal melanocytes) can be correlated to a response by the immune system (with or without immunotherapy treatments) to melanoma. Long story short, vitiligo is often viewed as a good thing, not every patient will experience it, but when they do, the doctors are usually pleased. I've had TIL, IL-2, and ipilimumab and have some vitiligo on my hands, feet, neck, and torso. It's not extremely noticeable because I'm pretty pale these days 😉 but it is definitely present, and my doctors are always happy about to see it.Joe -
- June 15, 2014 at 8:22 pm
Hi Colleen,
I finished a 2 1/2 year Nivo trial in June of 2013 and began to develop vitiligo after my fourth dose. It has continued to progress, though has become more stable recently. Here are some articles addressing the phenomenon that I posted earlier this year.
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/vitiligo-and-melanoma.html
And then, if you want to see some rather weird pics (Ha!), you can see the progression of my vitiligo as of 2013, along with another note about cause and origin.
While all patients with complete and rather durable responses to IL2, ipi, and anti-PD1 do not develop vitiligo, it is thought to be a positive sign in those of us who do.
Wishing you my best. Celeste
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- June 15, 2014 at 8:22 pm
Hi Colleen,
I finished a 2 1/2 year Nivo trial in June of 2013 and began to develop vitiligo after my fourth dose. It has continued to progress, though has become more stable recently. Here are some articles addressing the phenomenon that I posted earlier this year.
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/vitiligo-and-melanoma.html
And then, if you want to see some rather weird pics (Ha!), you can see the progression of my vitiligo as of 2013, along with another note about cause and origin.
While all patients with complete and rather durable responses to IL2, ipi, and anti-PD1 do not develop vitiligo, it is thought to be a positive sign in those of us who do.
Wishing you my best. Celeste
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- June 15, 2014 at 10:16 pm
Thank you Celeste. Mine has started on my right hand also. The left hand is now starting to match it. I appreciate you putting up the pictures.
Do you have your Oncologist deal with the Vitiligo? Is it something that needs to be discussed with them at all? I'm making an appointment with my local Derm tomorrow anyway for a mystery rash and mole check.
Thanks for your time.
Colleen
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- June 15, 2014 at 10:16 pm
Thank you Celeste. Mine has started on my right hand also. The left hand is now starting to match it. I appreciate you putting up the pictures.
Do you have your Oncologist deal with the Vitiligo? Is it something that needs to be discussed with them at all? I'm making an appointment with my local Derm tomorrow anyway for a mystery rash and mole check.
Thanks for your time.
Colleen
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- June 15, 2014 at 11:41 pm
There hasn't been anything for me that's needed to be done necessarily, it's not something that requires any treatment. Mine started subtly enough that I had to point it out to both my medical oncologist and dermatologist, but my medical oncologist continues to take a particular interest in it, primarily because he's so encouraged by it. When I first started noticing it, it was actually the darker areas that looked like dirty splotches that wouldn't come off, and it soon realized that the darker areas were spots where the pigment remained and the light spots were vitiligo. Recently, I've also noticed that many of my moles have faded significantly or disappeared entirely. The vitiligo has slowly progressed over two or three years, same with the mole depigmentation although I've only noticed that aspect more over the past 6-9 months. Same thing, though, I showed my medical oncologist a "before" picture of my arm as an example, and I'd estimate that there are probably 80% fewer moles — as I left my last appointment, we were walking one way down the hall, and he the other, and the last thing he said was, "Love that picture!"The one thing I try to do, though, is not discourage someone who has had the same or similar immunotherapies but isn't experiencing vitiligo or mole depigmentation. As Celeste pointed out, there are plenty of examples of strong and complete responders who haven't had that. It's nice to have such an outward sign of at least some kind of response, but not a requirement. Enjoy it as sort of a badge of honor!Joe -
- June 15, 2014 at 11:41 pm
There hasn't been anything for me that's needed to be done necessarily, it's not something that requires any treatment. Mine started subtly enough that I had to point it out to both my medical oncologist and dermatologist, but my medical oncologist continues to take a particular interest in it, primarily because he's so encouraged by it. When I first started noticing it, it was actually the darker areas that looked like dirty splotches that wouldn't come off, and it soon realized that the darker areas were spots where the pigment remained and the light spots were vitiligo. Recently, I've also noticed that many of my moles have faded significantly or disappeared entirely. The vitiligo has slowly progressed over two or three years, same with the mole depigmentation although I've only noticed that aspect more over the past 6-9 months. Same thing, though, I showed my medical oncologist a "before" picture of my arm as an example, and I'd estimate that there are probably 80% fewer moles — as I left my last appointment, we were walking one way down the hall, and he the other, and the last thing he said was, "Love that picture!"The one thing I try to do, though, is not discourage someone who has had the same or similar immunotherapies but isn't experiencing vitiligo or mole depigmentation. As Celeste pointed out, there are plenty of examples of strong and complete responders who haven't had that. It's nice to have such an outward sign of at least some kind of response, but not a requirement. Enjoy it as sort of a badge of honor!Joe -
- June 15, 2014 at 11:41 pm
There hasn't been anything for me that's needed to be done necessarily, it's not something that requires any treatment. Mine started subtly enough that I had to point it out to both my medical oncologist and dermatologist, but my medical oncologist continues to take a particular interest in it, primarily because he's so encouraged by it. When I first started noticing it, it was actually the darker areas that looked like dirty splotches that wouldn't come off, and it soon realized that the darker areas were spots where the pigment remained and the light spots were vitiligo. Recently, I've also noticed that many of my moles have faded significantly or disappeared entirely. The vitiligo has slowly progressed over two or three years, same with the mole depigmentation although I've only noticed that aspect more over the past 6-9 months. Same thing, though, I showed my medical oncologist a "before" picture of my arm as an example, and I'd estimate that there are probably 80% fewer moles — as I left my last appointment, we were walking one way down the hall, and he the other, and the last thing he said was, "Love that picture!"The one thing I try to do, though, is not discourage someone who has had the same or similar immunotherapies but isn't experiencing vitiligo or mole depigmentation. As Celeste pointed out, there are plenty of examples of strong and complete responders who haven't had that. It's nice to have such an outward sign of at least some kind of response, but not a requirement. Enjoy it as sort of a badge of honor!Joe -
- June 16, 2014 at 12:25 am
Hey Colleen,
Glad that helped a little. There is no treatment for vitiligo…which for some folks…especially those with dark skin and with vitiligo on their face…can be considered disfiguring. So, there is no treatment to be had or, in our case, I guess, needed. But, for your own peace of mind, it might be nice to at least confirm that vitiligo is indeed what you're seeing on your skin and also attain your doc's opinion of the things we've passed on here. Both my onc and dermatologist have followed my vitiligo over the years. The only real thing to do is be even more emphatic about sun protection…as the skin with vitiligo will be even more sun sensitive.
Yours, Celeste
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- June 16, 2014 at 12:25 am
Hey Colleen,
Glad that helped a little. There is no treatment for vitiligo…which for some folks…especially those with dark skin and with vitiligo on their face…can be considered disfiguring. So, there is no treatment to be had or, in our case, I guess, needed. But, for your own peace of mind, it might be nice to at least confirm that vitiligo is indeed what you're seeing on your skin and also attain your doc's opinion of the things we've passed on here. Both my onc and dermatologist have followed my vitiligo over the years. The only real thing to do is be even more emphatic about sun protection…as the skin with vitiligo will be even more sun sensitive.
Yours, Celeste
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- June 16, 2014 at 12:25 am
Hey Colleen,
Glad that helped a little. There is no treatment for vitiligo…which for some folks…especially those with dark skin and with vitiligo on their face…can be considered disfiguring. So, there is no treatment to be had or, in our case, I guess, needed. But, for your own peace of mind, it might be nice to at least confirm that vitiligo is indeed what you're seeing on your skin and also attain your doc's opinion of the things we've passed on here. Both my onc and dermatologist have followed my vitiligo over the years. The only real thing to do is be even more emphatic about sun protection…as the skin with vitiligo will be even more sun sensitive.
Yours, Celeste
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- June 16, 2014 at 12:14 pm
Thanks Again Celest.
Hard to think of my skin being MORE sensitive to the sun but will take note. I usually were long sleeve blouses and long slacks in the summer and I'm a hat person. Do you cover your hands with gloves if your out for some time? Or is normal suncreen sufficient.
I thank both of you for your time.
Colleen
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- June 16, 2014 at 12:14 pm
Thanks Again Celest.
Hard to think of my skin being MORE sensitive to the sun but will take note. I usually were long sleeve blouses and long slacks in the summer and I'm a hat person. Do you cover your hands with gloves if your out for some time? Or is normal suncreen sufficient.
I thank both of you for your time.
Colleen
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- June 16, 2014 at 12:14 pm
Thanks Again Celest.
Hard to think of my skin being MORE sensitive to the sun but will take note. I usually were long sleeve blouses and long slacks in the summer and I'm a hat person. Do you cover your hands with gloves if your out for some time? Or is normal suncreen sufficient.
I thank both of you for your time.
Colleen
-
- June 15, 2014 at 10:16 pm
Thank you Celeste. Mine has started on my right hand also. The left hand is now starting to match it. I appreciate you putting up the pictures.
Do you have your Oncologist deal with the Vitiligo? Is it something that needs to be discussed with them at all? I'm making an appointment with my local Derm tomorrow anyway for a mystery rash and mole check.
Thanks for your time.
Colleen
-
- June 15, 2014 at 8:22 pm
Hi Colleen,
I finished a 2 1/2 year Nivo trial in June of 2013 and began to develop vitiligo after my fourth dose. It has continued to progress, though has become more stable recently. Here are some articles addressing the phenomenon that I posted earlier this year.
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/vitiligo-and-melanoma.html
And then, if you want to see some rather weird pics (Ha!), you can see the progression of my vitiligo as of 2013, along with another note about cause and origin.
While all patients with complete and rather durable responses to IL2, ipi, and anti-PD1 do not develop vitiligo, it is thought to be a positive sign in those of us who do.
Wishing you my best. Celeste
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- June 16, 2014 at 7:32 pm
My Derm confirmed the diagnoses of Vitiligo this afternoon. I have mixed feelings about it. But, as usual, we push on.
Best Wishes to all you Warriors.
Colleen
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- June 17, 2014 at 12:59 am
Hey Colleen,
Well, at least you know for sure what you are dealing with and don't have to ponder "what the heck???" questions anymore. I'll be honest. I hate my vitiligo. Is it way, way, way, better than being dead? For sure!!!! Am I a million times luckier than lots and lots and lots of patients on this board and people in the universe? ABSOLUTELY! Ironically, before melanoma…I had really pretty skin. It just goes to show that beauty really is only skin deep! HA! So…live and learn. A daily lesson I suppose. You can wear it like a badge….or not… I am not ashamed of my vitiligo. But, I'm not ashamed to say that I do not see it as beautiful either. It is what it is. But…to answer your questions….I am a runner. In the summer, that is a challenge. Sunscreen is ALWAYS involved and light weight longsleeved shirts often figure in as well. The risk of a burn is not as great as folks dealing with BRAFi have to face….but it is something you have to keep in mind.
Yours, Celeste
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- June 17, 2014 at 12:59 am
Hey Colleen,
Well, at least you know for sure what you are dealing with and don't have to ponder "what the heck???" questions anymore. I'll be honest. I hate my vitiligo. Is it way, way, way, better than being dead? For sure!!!! Am I a million times luckier than lots and lots and lots of patients on this board and people in the universe? ABSOLUTELY! Ironically, before melanoma…I had really pretty skin. It just goes to show that beauty really is only skin deep! HA! So…live and learn. A daily lesson I suppose. You can wear it like a badge….or not… I am not ashamed of my vitiligo. But, I'm not ashamed to say that I do not see it as beautiful either. It is what it is. But…to answer your questions….I am a runner. In the summer, that is a challenge. Sunscreen is ALWAYS involved and light weight longsleeved shirts often figure in as well. The risk of a burn is not as great as folks dealing with BRAFi have to face….but it is something you have to keep in mind.
Yours, Celeste
-
- June 17, 2014 at 12:59 am
Hey Colleen,
Well, at least you know for sure what you are dealing with and don't have to ponder "what the heck???" questions anymore. I'll be honest. I hate my vitiligo. Is it way, way, way, better than being dead? For sure!!!! Am I a million times luckier than lots and lots and lots of patients on this board and people in the universe? ABSOLUTELY! Ironically, before melanoma…I had really pretty skin. It just goes to show that beauty really is only skin deep! HA! So…live and learn. A daily lesson I suppose. You can wear it like a badge….or not… I am not ashamed of my vitiligo. But, I'm not ashamed to say that I do not see it as beautiful either. It is what it is. But…to answer your questions….I am a runner. In the summer, that is a challenge. Sunscreen is ALWAYS involved and light weight longsleeved shirts often figure in as well. The risk of a burn is not as great as folks dealing with BRAFi have to face….but it is something you have to keep in mind.
Yours, Celeste
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- June 16, 2014 at 8:36 pm
I have been on Mercks PD1 MK-3475 trial for a little over a year and a half. I have just started with 4 vitiligo spots on me. This probably started at about a year into the treatment. They are each perfectly round white circles. 3 are on my left shoulder and one is on my right forehead. Both my Onc and Derm said that this is a great sign that the treatment is working and that more vitiligo might pop up in the future.
Laurie
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- June 17, 2014 at 11:31 am
Thanks SweetAugust for your reply.
I have mixed feelings about it. Yes, it's not life threatening and could help bit but at the same time it can be disfiguring. With so many scars and now this I don't feel very attractive anymore but yes, living is much better than looking good.
I have quite a few AI diseses now aside from the Melanoma and it feels like my immune system has decided to attack my whole body. I guess it just gets me down when something else is piled on top. I have difficulty handleing the cancer diagnoses by itself without dealing with all the extras that life throws out at you.
I'm not looking for a pity party here, just wanted to get these feeling out.
Blessing to all.
Colleen
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- June 17, 2014 at 3:48 pm
It's not easy what any of us have to go through. Joining this club that non of us wanted to be a part of. I know all too well about the scars. I have over a hundred scars from past surgeries and excisions. I've hidden my arms and legs for 14 years now. It can be easier to just tell people that I must keep covered up because of the sun. But I, and those close to me, know really it is an excuse to keep those scars hidden. So yes, I get it…and I get where you are coming from. 🙂 I guess the vitiligo doesn't really bother me at all because I am already hiding my scars…and because I know that the vitiligo is a sign that my body is doing what it is supposed to be doing and it is healing instead of attacking me.
You will hear from me again though, if the vitiligo starts showing up all over my face. Right now it is hidden and I am so fascinated by itbecause they are perfect circles. As if I traced some dimes and quarters and then put white-out on my skin. So funny to me. 🙂
All the best,
Laurie
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- June 17, 2014 at 3:48 pm
It's not easy what any of us have to go through. Joining this club that non of us wanted to be a part of. I know all too well about the scars. I have over a hundred scars from past surgeries and excisions. I've hidden my arms and legs for 14 years now. It can be easier to just tell people that I must keep covered up because of the sun. But I, and those close to me, know really it is an excuse to keep those scars hidden. So yes, I get it…and I get where you are coming from. 🙂 I guess the vitiligo doesn't really bother me at all because I am already hiding my scars…and because I know that the vitiligo is a sign that my body is doing what it is supposed to be doing and it is healing instead of attacking me.
You will hear from me again though, if the vitiligo starts showing up all over my face. Right now it is hidden and I am so fascinated by itbecause they are perfect circles. As if I traced some dimes and quarters and then put white-out on my skin. So funny to me. 🙂
All the best,
Laurie
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- June 17, 2014 at 3:48 pm
It's not easy what any of us have to go through. Joining this club that non of us wanted to be a part of. I know all too well about the scars. I have over a hundred scars from past surgeries and excisions. I've hidden my arms and legs for 14 years now. It can be easier to just tell people that I must keep covered up because of the sun. But I, and those close to me, know really it is an excuse to keep those scars hidden. So yes, I get it…and I get where you are coming from. 🙂 I guess the vitiligo doesn't really bother me at all because I am already hiding my scars…and because I know that the vitiligo is a sign that my body is doing what it is supposed to be doing and it is healing instead of attacking me.
You will hear from me again though, if the vitiligo starts showing up all over my face. Right now it is hidden and I am so fascinated by itbecause they are perfect circles. As if I traced some dimes and quarters and then put white-out on my skin. So funny to me. 🙂
All the best,
Laurie
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- June 17, 2014 at 11:31 am
Thanks SweetAugust for your reply.
I have mixed feelings about it. Yes, it's not life threatening and could help bit but at the same time it can be disfiguring. With so many scars and now this I don't feel very attractive anymore but yes, living is much better than looking good.
I have quite a few AI diseses now aside from the Melanoma and it feels like my immune system has decided to attack my whole body. I guess it just gets me down when something else is piled on top. I have difficulty handleing the cancer diagnoses by itself without dealing with all the extras that life throws out at you.
I'm not looking for a pity party here, just wanted to get these feeling out.
Blessing to all.
Colleen
-
- June 17, 2014 at 11:31 am
Thanks SweetAugust for your reply.
I have mixed feelings about it. Yes, it's not life threatening and could help bit but at the same time it can be disfiguring. With so many scars and now this I don't feel very attractive anymore but yes, living is much better than looking good.
I have quite a few AI diseses now aside from the Melanoma and it feels like my immune system has decided to attack my whole body. I guess it just gets me down when something else is piled on top. I have difficulty handleing the cancer diagnoses by itself without dealing with all the extras that life throws out at you.
I'm not looking for a pity party here, just wanted to get these feeling out.
Blessing to all.
Colleen
-
- June 16, 2014 at 8:36 pm
I have been on Mercks PD1 MK-3475 trial for a little over a year and a half. I have just started with 4 vitiligo spots on me. This probably started at about a year into the treatment. They are each perfectly round white circles. 3 are on my left shoulder and one is on my right forehead. Both my Onc and Derm said that this is a great sign that the treatment is working and that more vitiligo might pop up in the future.
Laurie
-
- June 16, 2014 at 8:36 pm
I have been on Mercks PD1 MK-3475 trial for a little over a year and a half. I have just started with 4 vitiligo spots on me. This probably started at about a year into the treatment. They are each perfectly round white circles. 3 are on my left shoulder and one is on my right forehead. Both my Onc and Derm said that this is a great sign that the treatment is working and that more vitiligo might pop up in the future.
Laurie
-
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