› Forums › General Melanoma Community › Melanoma Questions
- This topic has 24 replies, 4 voices, and was last updated 9 years, 11 months ago by
yunielth.
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- May 27, 2015 at 7:19 am
Hello everyone.
First of all forgive me for my bad English (its not my mother but Spanish)
Since the diagnosis of my sister (Superficial spreading melanoma, stage 1A melanoma Breslow depth 0.6 mm, clark III) last year, there is no day in which I dont wake up or dream about it, the scared of a possible recurrence in the next months or years terrifies me.
I have been searching at the internet the odds of a possible recurrence. I have read many people with stage 1 become stage 3 or 4, according to statistics is very low probability, the vast majority are "cure", but always read these things happens, which is my greatest fear.
I suffer in the flesh every time I read some reviews of this kind, I know how hard it is or how bad it could be.
I have read many stage 2 or 3 dont receive any treatment, the interferon is contraindicated. I do not understand why is not possible to not use immunotherapy as used with patients of stage 4, there are evidences of effectiveness in most patients.
No reason why my sister had melanoma, no one in my family that I know has been diagnosed, she now lives in Germany, but we are from Cuba. My theory is that being in Cuba his body was adapted to the sun and produced the vitamin D3 that her body needs and when she moved to Alemnia where almost no sun did not produce this vitamin, and possible her immune system defenses go down and then appeared of the melanoma. Is it possible?
Another question, Is recommended to take vitamin d3, always use sunscreen and take other supplements such as green tea, CoQ10, IP6 Inositol, Omega3 etc?
Thank you very much to all and a lot of strength and encouragement for all.
Yuni
- Replies
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- May 27, 2015 at 12:24 pm
I assume she doesn't do the tanning booths. Thst is a huge increase in risk. If she did it even once that is probably the cause.
Helping with vitamins and green tea can help. As well as eatting a more healthy lifestyle and getting rid of stress.
Most of the time stage 1 can be cured. I too have read a few cases where several years later the person suddenly becomes stage 3 or 4. I'm not sure if anyone knows why.
Fortunately at stage 3 there is a trial now where they can get either yervoy or pd1. Some day I imagine they will prove that is good so it becomes standard for stage 3 like it is for stage 4. However like any medicine there are risks. So they have to figure out if the risks are worth the possible benefit.
Artie
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- May 27, 2015 at 12:24 pm
I assume she doesn't do the tanning booths. Thst is a huge increase in risk. If she did it even once that is probably the cause.
Helping with vitamins and green tea can help. As well as eatting a more healthy lifestyle and getting rid of stress.
Most of the time stage 1 can be cured. I too have read a few cases where several years later the person suddenly becomes stage 3 or 4. I'm not sure if anyone knows why.
Fortunately at stage 3 there is a trial now where they can get either yervoy or pd1. Some day I imagine they will prove that is good so it becomes standard for stage 3 like it is for stage 4. However like any medicine there are risks. So they have to figure out if the risks are worth the possible benefit.
Artie
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- May 27, 2015 at 12:24 pm
I assume she doesn't do the tanning booths. Thst is a huge increase in risk. If she did it even once that is probably the cause.
Helping with vitamins and green tea can help. As well as eatting a more healthy lifestyle and getting rid of stress.
Most of the time stage 1 can be cured. I too have read a few cases where several years later the person suddenly becomes stage 3 or 4. I'm not sure if anyone knows why.
Fortunately at stage 3 there is a trial now where they can get either yervoy or pd1. Some day I imagine they will prove that is good so it becomes standard for stage 3 like it is for stage 4. However like any medicine there are risks. So they have to figure out if the risks are worth the possible benefit.
Artie
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- May 27, 2015 at 2:07 pm
You will never know exactly why your sister developed melanoma. There are people who don't fit any of the high risk criteria that still get it. The good news is she got it early! You just need to focus on that. No research will answer the question will she ever have a recurrence despite being extremely low risk. Extremely unlikely as we discussed before, but never a guarantee. As for supplements, nothing is PROVEN to prevent a recurrence. If SHE feels more empowered taking them, then great. But it should be her choice. It's about losing control. If diet and supplements help her feel an additional sense of control (and maybe some physical benefit), then I'm all for making lifestyle changes. Some people swear by them. Others recur regardless of what they do or don't do. But most of those are NOT stage 1a in today's staging which is a very exclusive club.
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- May 27, 2015 at 4:21 pm
Hi Janner and Arthurjedi007! How are you?
Thanks for your response.
My sister has never done tanning booths, the melanoma appeared I think two years after she moved to Germany, that´s why I was thinking about the low deficiency of d3 vitamin, I guess, I can not confirm that because she didnt do any blood test measuring her d3 levels, she was under some stressed beacuse she was divorcing, and we have a blood desease called spherocytosis but in our case is not sever, it is an auto-hemolytic anemia, but we never have experienced extreme anemia, I am not sure if this could be an incidence factor.
Last days I read an article about melanoma and it confirmed that people with low D3 vitamin levels are associated with breslow thickness at the moment of diagnosis, they are inversely proportional, but can not confirm that taking D3 vitamin supplents will improve the outcomes or a possible recurrence.
Another article is controversial to me, also read that moderate sunbathing are not bad and could help avoid skin cancer, just a few minutes a days before the skin turns pink, and the apply the sunscreen.
My sister´s melanoma was on the middle of her left clavicle (trunk ???), do you know what is the probabilities of recurrences on this area, the lymphatic drenage of it?, I know all of these questions are very hard to explain and unpredictable. I know I'm torturing myself, sorry!
I wanted to know why immunotherapy is not used in patients with stage 1 to 3. The risk dont worth the possible benefit or the treatment is too expensive? Is not better to attack before to go to an upper stage?
Just want to understand why in some stages have to wait until can see an evidence of disease.
Thanks again Janner for your advices and help! Thanks to Arthurjedi007 too!
Yuni.
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- May 27, 2015 at 9:47 pm
There are no approved treatments (adjuvant) that currently show any survival benefit. Interferon is the only approved adjuvant treatment for stage 3 and it has serious side effects. Stage 1a has maybe a 97% survival rate. You want people to have a high side effect treatment with no survival benefit when her current survival stats are that high? It just doesn't make sense. Maybe in the future there will be a good adjuvant treatment that might be extended to some high risk stage 1s. But it doesn't exist now. And your sister isn't even considered high risk stage 1. Your sisters probability of recurrence is tiny, but her doc would be the best one to discuss her case, drainage patterns and the like. Tell me, is your sister as worried as you are? Is she the one asking about treatments and supplements or are you just volunteering this info? Her docs can provide her with much better info than we can regarding HER actual prognosis. Germany is very progressive and aggressive with treatments and probably offer other treatments not available in the USA.
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- May 28, 2015 at 6:46 am
Hi Janner, yes you are right!!! I am the one who is more worried, I am overprotecting her, I know, but is my sister and just dont want something bad happen to her. I know she is low risk, but I am afraid of a possible recurrence. I know as you once told me even if she recurres is not a death sentence but dont want that happens! I just also read some post of people who use supplements and change theirs diet dramatically, I know there is nothing proven that supplements can helps besides in labs (curcumin etc…)
Thanks again for all you info and help.
Greetings from Barcelona!
Yuni.
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- June 2, 2015 at 1:12 am
The risk of autoimmune side effects is also much higher in Stage 3 patients when using ipimilumab.
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- June 2, 2015 at 1:12 am
The risk of autoimmune side effects is also much higher in Stage 3 patients when using ipimilumab.
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- June 2, 2015 at 1:12 am
The risk of autoimmune side effects is also much higher in Stage 3 patients when using ipimilumab.
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- May 28, 2015 at 6:46 am
Hi Janner, yes you are right!!! I am the one who is more worried, I am overprotecting her, I know, but is my sister and just dont want something bad happen to her. I know she is low risk, but I am afraid of a possible recurrence. I know as you once told me even if she recurres is not a death sentence but dont want that happens! I just also read some post of people who use supplements and change theirs diet dramatically, I know there is nothing proven that supplements can helps besides in labs (curcumin etc…)
Thanks again for all you info and help.
Greetings from Barcelona!
Yuni.
-
- May 28, 2015 at 6:46 am
Hi Janner, yes you are right!!! I am the one who is more worried, I am overprotecting her, I know, but is my sister and just dont want something bad happen to her. I know she is low risk, but I am afraid of a possible recurrence. I know as you once told me even if she recurres is not a death sentence but dont want that happens! I just also read some post of people who use supplements and change theirs diet dramatically, I know there is nothing proven that supplements can helps besides in labs (curcumin etc…)
Thanks again for all you info and help.
Greetings from Barcelona!
Yuni.
-
- May 27, 2015 at 9:47 pm
There are no approved treatments (adjuvant) that currently show any survival benefit. Interferon is the only approved adjuvant treatment for stage 3 and it has serious side effects. Stage 1a has maybe a 97% survival rate. You want people to have a high side effect treatment with no survival benefit when her current survival stats are that high? It just doesn't make sense. Maybe in the future there will be a good adjuvant treatment that might be extended to some high risk stage 1s. But it doesn't exist now. And your sister isn't even considered high risk stage 1. Your sisters probability of recurrence is tiny, but her doc would be the best one to discuss her case, drainage patterns and the like. Tell me, is your sister as worried as you are? Is she the one asking about treatments and supplements or are you just volunteering this info? Her docs can provide her with much better info than we can regarding HER actual prognosis. Germany is very progressive and aggressive with treatments and probably offer other treatments not available in the USA.
-
- May 27, 2015 at 9:47 pm
There are no approved treatments (adjuvant) that currently show any survival benefit. Interferon is the only approved adjuvant treatment for stage 3 and it has serious side effects. Stage 1a has maybe a 97% survival rate. You want people to have a high side effect treatment with no survival benefit when her current survival stats are that high? It just doesn't make sense. Maybe in the future there will be a good adjuvant treatment that might be extended to some high risk stage 1s. But it doesn't exist now. And your sister isn't even considered high risk stage 1. Your sisters probability of recurrence is tiny, but her doc would be the best one to discuss her case, drainage patterns and the like. Tell me, is your sister as worried as you are? Is she the one asking about treatments and supplements or are you just volunteering this info? Her docs can provide her with much better info than we can regarding HER actual prognosis. Germany is very progressive and aggressive with treatments and probably offer other treatments not available in the USA.
-
- May 27, 2015 at 4:21 pm
Hi Janner and Arthurjedi007! How are you?
Thanks for your response.
My sister has never done tanning booths, the melanoma appeared I think two years after she moved to Germany, that´s why I was thinking about the low deficiency of d3 vitamin, I guess, I can not confirm that because she didnt do any blood test measuring her d3 levels, she was under some stressed beacuse she was divorcing, and we have a blood desease called spherocytosis but in our case is not sever, it is an auto-hemolytic anemia, but we never have experienced extreme anemia, I am not sure if this could be an incidence factor.
Last days I read an article about melanoma and it confirmed that people with low D3 vitamin levels are associated with breslow thickness at the moment of diagnosis, they are inversely proportional, but can not confirm that taking D3 vitamin supplents will improve the outcomes or a possible recurrence.
Another article is controversial to me, also read that moderate sunbathing are not bad and could help avoid skin cancer, just a few minutes a days before the skin turns pink, and the apply the sunscreen.
My sister´s melanoma was on the middle of her left clavicle (trunk ???), do you know what is the probabilities of recurrences on this area, the lymphatic drenage of it?, I know all of these questions are very hard to explain and unpredictable. I know I'm torturing myself, sorry!
I wanted to know why immunotherapy is not used in patients with stage 1 to 3. The risk dont worth the possible benefit or the treatment is too expensive? Is not better to attack before to go to an upper stage?
Just want to understand why in some stages have to wait until can see an evidence of disease.
Thanks again Janner for your advices and help! Thanks to Arthurjedi007 too!
Yuni.
-
- May 27, 2015 at 4:21 pm
Hi Janner and Arthurjedi007! How are you?
Thanks for your response.
My sister has never done tanning booths, the melanoma appeared I think two years after she moved to Germany, that´s why I was thinking about the low deficiency of d3 vitamin, I guess, I can not confirm that because she didnt do any blood test measuring her d3 levels, she was under some stressed beacuse she was divorcing, and we have a blood desease called spherocytosis but in our case is not sever, it is an auto-hemolytic anemia, but we never have experienced extreme anemia, I am not sure if this could be an incidence factor.
Last days I read an article about melanoma and it confirmed that people with low D3 vitamin levels are associated with breslow thickness at the moment of diagnosis, they are inversely proportional, but can not confirm that taking D3 vitamin supplents will improve the outcomes or a possible recurrence.
Another article is controversial to me, also read that moderate sunbathing are not bad and could help avoid skin cancer, just a few minutes a days before the skin turns pink, and the apply the sunscreen.
My sister´s melanoma was on the middle of her left clavicle (trunk ???), do you know what is the probabilities of recurrences on this area, the lymphatic drenage of it?, I know all of these questions are very hard to explain and unpredictable. I know I'm torturing myself, sorry!
I wanted to know why immunotherapy is not used in patients with stage 1 to 3. The risk dont worth the possible benefit or the treatment is too expensive? Is not better to attack before to go to an upper stage?
Just want to understand why in some stages have to wait until can see an evidence of disease.
Thanks again Janner for your advices and help! Thanks to Arthurjedi007 too!
Yuni.
-
- May 27, 2015 at 2:07 pm
You will never know exactly why your sister developed melanoma. There are people who don't fit any of the high risk criteria that still get it. The good news is she got it early! You just need to focus on that. No research will answer the question will she ever have a recurrence despite being extremely low risk. Extremely unlikely as we discussed before, but never a guarantee. As for supplements, nothing is PROVEN to prevent a recurrence. If SHE feels more empowered taking them, then great. But it should be her choice. It's about losing control. If diet and supplements help her feel an additional sense of control (and maybe some physical benefit), then I'm all for making lifestyle changes. Some people swear by them. Others recur regardless of what they do or don't do. But most of those are NOT stage 1a in today's staging which is a very exclusive club.
-
- May 27, 2015 at 2:07 pm
You will never know exactly why your sister developed melanoma. There are people who don't fit any of the high risk criteria that still get it. The good news is she got it early! You just need to focus on that. No research will answer the question will she ever have a recurrence despite being extremely low risk. Extremely unlikely as we discussed before, but never a guarantee. As for supplements, nothing is PROVEN to prevent a recurrence. If SHE feels more empowered taking them, then great. But it should be her choice. It's about losing control. If diet and supplements help her feel an additional sense of control (and maybe some physical benefit), then I'm all for making lifestyle changes. Some people swear by them. Others recur regardless of what they do or don't do. But most of those are NOT stage 1a in today's staging which is a very exclusive club.
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