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- This topic has 42 replies, 8 voices, and was last updated 9 years, 4 months ago by
debwray.
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- November 3, 2016 at 12:16 am
First thing that we all say is "does your son have a melanoma specialist treating him"? That's always a must, an oncologist that only treats melanoma and usually these are found at large research hospitals.
Ipi was FDA approved as adjuvant treatment for stage 3 a year ago, I did it, I was also diagnosed 3b a year ago, and had no major side effects.
Keytruda I am guessing would be a clinical trial option, since it is not yet approved in the adjuvant setting. That's a great choice, if your son is comfortable with everything that goes along with doing a clinical trial. It has less toxicity than Ipi (Yervoy) so the side effects tend to be less and more manageable.
Sounds like he's got a good doctor. Doing a CLND is another hot topic on here. I did not have one, but it's a personal choice and some melanoma specialists don't recommend them anymore and prefer to go straight to systemic therapy, and a lot of other specialists still stick with it as the standard of care.
Any other questions or concerns, lots of great folks on here are happy to help you out. This can be a very stressful and head spinning time.
All the best,
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- November 3, 2016 at 12:16 am
First thing that we all say is "does your son have a melanoma specialist treating him"? That's always a must, an oncologist that only treats melanoma and usually these are found at large research hospitals.
Ipi was FDA approved as adjuvant treatment for stage 3 a year ago, I did it, I was also diagnosed 3b a year ago, and had no major side effects.
Keytruda I am guessing would be a clinical trial option, since it is not yet approved in the adjuvant setting. That's a great choice, if your son is comfortable with everything that goes along with doing a clinical trial. It has less toxicity than Ipi (Yervoy) so the side effects tend to be less and more manageable.
Sounds like he's got a good doctor. Doing a CLND is another hot topic on here. I did not have one, but it's a personal choice and some melanoma specialists don't recommend them anymore and prefer to go straight to systemic therapy, and a lot of other specialists still stick with it as the standard of care.
Any other questions or concerns, lots of great folks on here are happy to help you out. This can be a very stressful and head spinning time.
All the best,
-
- November 3, 2016 at 12:16 am
First thing that we all say is "does your son have a melanoma specialist treating him"? That's always a must, an oncologist that only treats melanoma and usually these are found at large research hospitals.
Ipi was FDA approved as adjuvant treatment for stage 3 a year ago, I did it, I was also diagnosed 3b a year ago, and had no major side effects.
Keytruda I am guessing would be a clinical trial option, since it is not yet approved in the adjuvant setting. That's a great choice, if your son is comfortable with everything that goes along with doing a clinical trial. It has less toxicity than Ipi (Yervoy) so the side effects tend to be less and more manageable.
Sounds like he's got a good doctor. Doing a CLND is another hot topic on here. I did not have one, but it's a personal choice and some melanoma specialists don't recommend them anymore and prefer to go straight to systemic therapy, and a lot of other specialists still stick with it as the standard of care.
Any other questions or concerns, lots of great folks on here are happy to help you out. This can be a very stressful and head spinning time.
All the best,
-
- November 3, 2016 at 1:00 am
Yes,the dr is a melanoma specialist at Massey Cancer Center and the Keytruda is a trial. I am worried about the clnd, but both Drs are saying it is the best next step along with treatment. He is having a ct scan Friday as his insurance will not authorize a pet scan. Glad to hear you did not have side effects I am worried about them, too. I'm trying to get good info to help him although I'm aware that the decision is his to make. Thank you.
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- November 3, 2016 at 1:00 am
Yes,the dr is a melanoma specialist at Massey Cancer Center and the Keytruda is a trial. I am worried about the clnd, but both Drs are saying it is the best next step along with treatment. He is having a ct scan Friday as his insurance will not authorize a pet scan. Glad to hear you did not have side effects I am worried about them, too. I'm trying to get good info to help him although I'm aware that the decision is his to make. Thank you.
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- November 3, 2016 at 1:00 am
Yes,the dr is a melanoma specialist at Massey Cancer Center and the Keytruda is a trial. I am worried about the clnd, but both Drs are saying it is the best next step along with treatment. He is having a ct scan Friday as his insurance will not authorize a pet scan. Glad to hear you did not have side effects I am worried about them, too. I'm trying to get good info to help him although I'm aware that the decision is his to make. Thank you.
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- November 3, 2016 at 2:16 am
My parents did the same for me. For what its worth, my melanoma dermatologist told me that gingers carry a certain gene making us much more prone to developing melanoma and isn't neccessarily from any major sun exposure.
The side effects that I did experience were minimal compared to what some people get. I think being young and otherwise healthy helped a lot with being able to tolerate it well. Hopefully your son has a similar experience… but I hope more that his adjuvant treatment keeps melanoma away for good. Ipi alone didn't work so well for me, which is why I am 3C now and starting over with a new treatment cycle.
I know it can be hard to find others around the same age going through this, if your son ever has questions or wants to vent to someone who totally understands having this diagnosis and being 29, you can always click the contact tab in my profile and it will go to my email.
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- November 3, 2016 at 2:16 am
My parents did the same for me. For what its worth, my melanoma dermatologist told me that gingers carry a certain gene making us much more prone to developing melanoma and isn't neccessarily from any major sun exposure.
The side effects that I did experience were minimal compared to what some people get. I think being young and otherwise healthy helped a lot with being able to tolerate it well. Hopefully your son has a similar experience… but I hope more that his adjuvant treatment keeps melanoma away for good. Ipi alone didn't work so well for me, which is why I am 3C now and starting over with a new treatment cycle.
I know it can be hard to find others around the same age going through this, if your son ever has questions or wants to vent to someone who totally understands having this diagnosis and being 29, you can always click the contact tab in my profile and it will go to my email.
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- November 3, 2016 at 2:16 am
My parents did the same for me. For what its worth, my melanoma dermatologist told me that gingers carry a certain gene making us much more prone to developing melanoma and isn't neccessarily from any major sun exposure.
The side effects that I did experience were minimal compared to what some people get. I think being young and otherwise healthy helped a lot with being able to tolerate it well. Hopefully your son has a similar experience… but I hope more that his adjuvant treatment keeps melanoma away for good. Ipi alone didn't work so well for me, which is why I am 3C now and starting over with a new treatment cycle.
I know it can be hard to find others around the same age going through this, if your son ever has questions or wants to vent to someone who totally understands having this diagnosis and being 29, you can always click the contact tab in my profile and it will go to my email.
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- November 3, 2016 at 1:47 am
Hi Valérie (Ken's mom)
I, like Jenn here, have been diagnosed Stage 3b in September. It is a very uncomfortable place to be. If you can get your hands on some ipi adjuvant, I think it's great. Jenn did it. I, being from Canada, am not offered that choice because it is not approved for stage 3 here. About CLND, because of my condition of «rare isolated cells», I am thorn apart. How was the funky node assessment in the pathology report? Something microscopic? organized? Something measurable? OR something a bit like me with low tumor burden?
Let me know
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- November 3, 2016 at 1:47 am
Hi Valérie (Ken's mom)
I, like Jenn here, have been diagnosed Stage 3b in September. It is a very uncomfortable place to be. If you can get your hands on some ipi adjuvant, I think it's great. Jenn did it. I, being from Canada, am not offered that choice because it is not approved for stage 3 here. About CLND, because of my condition of «rare isolated cells», I am thorn apart. How was the funky node assessment in the pathology report? Something microscopic? organized? Something measurable? OR something a bit like me with low tumor burden?
Let me know
-
- November 3, 2016 at 1:47 am
Hi Valérie (Ken's mom)
I, like Jenn here, have been diagnosed Stage 3b in September. It is a very uncomfortable place to be. If you can get your hands on some ipi adjuvant, I think it's great. Jenn did it. I, being from Canada, am not offered that choice because it is not approved for stage 3 here. About CLND, because of my condition of «rare isolated cells», I am thorn apart. How was the funky node assessment in the pathology report? Something microscopic? organized? Something measurable? OR something a bit like me with low tumor burden?
Let me know
-
- November 3, 2016 at 11:29 am
Hi, there are microscopic atypical melanocytes and focuses of capsular melanocytic nevus. Greek to me, but the dr said two nests of melanoma cells. He said my son's case was discussed at a conference he just attended. Not quite the way he'd like to be famous,lol. Because it is unusual the dr agrees strongly with the surgical onc that the clnd needs to be done. My son seems set on doing it ,and I will support his decision, but I am worried about the impact of lymphodema when he is young and it is his dominant arm. Maybe it won't be a problem. I'm sorry you have limited options, we are already seeing how much control insurance has over the medical decisions. It's not right! Best wishes!!
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- November 3, 2016 at 11:29 am
Hi, there are microscopic atypical melanocytes and focuses of capsular melanocytic nevus. Greek to me, but the dr said two nests of melanoma cells. He said my son's case was discussed at a conference he just attended. Not quite the way he'd like to be famous,lol. Because it is unusual the dr agrees strongly with the surgical onc that the clnd needs to be done. My son seems set on doing it ,and I will support his decision, but I am worried about the impact of lymphodema when he is young and it is his dominant arm. Maybe it won't be a problem. I'm sorry you have limited options, we are already seeing how much control insurance has over the medical decisions. It's not right! Best wishes!!
-
- November 3, 2016 at 11:29 am
Hi, there are microscopic atypical melanocytes and focuses of capsular melanocytic nevus. Greek to me, but the dr said two nests of melanoma cells. He said my son's case was discussed at a conference he just attended. Not quite the way he'd like to be famous,lol. Because it is unusual the dr agrees strongly with the surgical onc that the clnd needs to be done. My son seems set on doing it ,and I will support his decision, but I am worried about the impact of lymphodema when he is young and it is his dominant arm. Maybe it won't be a problem. I'm sorry you have limited options, we are already seeing how much control insurance has over the medical decisions. It's not right! Best wishes!!
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- November 3, 2016 at 1:54 pm
I did the clnd of my groin 3 years ago. I did develop lymphadema and it is something you will have to deal with forever,if you get it, not everyone does. But I am still alive and have not progressed at all. I also did ipi. If your son has nests of cells he needs to do the clnd. Melanoma is the most unpredictable cancer there is but it is obvious you shouldnt leave cancer in your body and then hope you are one of the 20% of responders. If you were to have found cancer anywhere else, you would remove it if able right? Lymphadema is minor when you are dealing with cancer and an arm if better than a leg. Ive heard many people have them in the arm and have no problems at all. -
- November 3, 2016 at 1:54 pm
I did the clnd of my groin 3 years ago. I did develop lymphadema and it is something you will have to deal with forever,if you get it, not everyone does. But I am still alive and have not progressed at all. I also did ipi. If your son has nests of cells he needs to do the clnd. Melanoma is the most unpredictable cancer there is but it is obvious you shouldnt leave cancer in your body and then hope you are one of the 20% of responders. If you were to have found cancer anywhere else, you would remove it if able right? Lymphadema is minor when you are dealing with cancer and an arm if better than a leg. Ive heard many people have them in the arm and have no problems at all. -
- November 3, 2016 at 1:54 pm
I did the clnd of my groin 3 years ago. I did develop lymphadema and it is something you will have to deal with forever,if you get it, not everyone does. But I am still alive and have not progressed at all. I also did ipi. If your son has nests of cells he needs to do the clnd. Melanoma is the most unpredictable cancer there is but it is obvious you shouldnt leave cancer in your body and then hope you are one of the 20% of responders. If you were to have found cancer anywhere else, you would remove it if able right? Lymphadema is minor when you are dealing with cancer and an arm if better than a leg. Ive heard many people have them in the arm and have no problems at all.
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- November 3, 2016 at 9:34 am
Hi,
The keytruda trial may have clnd as a precondition ? If so, if you decide the drug of choice is keytruda – and that is the overiding choice then you might have also made your decision on the clnd.
Sorry you are having to deal with these wicked choices…
Ipi is a shorter course- but probably tougher side effects (4 infusions 12 weeks )
Keytruda is a three weekly infusion over a longer period.
Current research seems to say better response rates if pd1 drug before ipi rather than the other way round.
Best response ipi and pd1 together but toxicities much greater.
Wishing you all well. I'm a stage Iv mum with two children in their early twenties, started ipi nivo this week…
It is all so very difficult.
Hugs
Deb
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- November 3, 2016 at 9:34 am
Hi,
The keytruda trial may have clnd as a precondition ? If so, if you decide the drug of choice is keytruda – and that is the overiding choice then you might have also made your decision on the clnd.
Sorry you are having to deal with these wicked choices…
Ipi is a shorter course- but probably tougher side effects (4 infusions 12 weeks )
Keytruda is a three weekly infusion over a longer period.
Current research seems to say better response rates if pd1 drug before ipi rather than the other way round.
Best response ipi and pd1 together but toxicities much greater.
Wishing you all well. I'm a stage Iv mum with two children in their early twenties, started ipi nivo this week…
It is all so very difficult.
Hugs
Deb
-
- November 3, 2016 at 9:34 am
Hi,
The keytruda trial may have clnd as a precondition ? If so, if you decide the drug of choice is keytruda – and that is the overiding choice then you might have also made your decision on the clnd.
Sorry you are having to deal with these wicked choices…
Ipi is a shorter course- but probably tougher side effects (4 infusions 12 weeks )
Keytruda is a three weekly infusion over a longer period.
Current research seems to say better response rates if pd1 drug before ipi rather than the other way round.
Best response ipi and pd1 together but toxicities much greater.
Wishing you all well. I'm a stage Iv mum with two children in their early twenties, started ipi nivo this week…
It is all so very difficult.
Hugs
Deb
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- November 3, 2016 at 11:41 am
Hi Deb, we will have to ask about the clnd bring a precondition. My husband and I both went with my son and I think we all heard different things! Lol! It's a lot to take in. I think he had a choice of ipi or the Keytruda trial. My son heard that he can do ipi or he can do the trial where he would receive either Keytruda or ipi (no placebos) . Hmmm I think that is another question to add to the growing list. He's leaning towards the Keytruda trial. I'm worried about the side effects and how sick will they make him. I'm also worried about managing side effects while continuing to work. If he can't work what happens to med ins? I honestly wish it were me rather than him going through this. I am so sorry for what you are going through, I hope your kids live close by you and that you have a great support group. Best wishes! Valérie
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- November 3, 2016 at 11:41 am
Hi Deb, we will have to ask about the clnd bring a precondition. My husband and I both went with my son and I think we all heard different things! Lol! It's a lot to take in. I think he had a choice of ipi or the Keytruda trial. My son heard that he can do ipi or he can do the trial where he would receive either Keytruda or ipi (no placebos) . Hmmm I think that is another question to add to the growing list. He's leaning towards the Keytruda trial. I'm worried about the side effects and how sick will they make him. I'm also worried about managing side effects while continuing to work. If he can't work what happens to med ins? I honestly wish it were me rather than him going through this. I am so sorry for what you are going through, I hope your kids live close by you and that you have a great support group. Best wishes! Valérie
-
- November 3, 2016 at 11:41 am
Hi Deb, we will have to ask about the clnd bring a precondition. My husband and I both went with my son and I think we all heard different things! Lol! It's a lot to take in. I think he had a choice of ipi or the Keytruda trial. My son heard that he can do ipi or he can do the trial where he would receive either Keytruda or ipi (no placebos) . Hmmm I think that is another question to add to the growing list. He's leaning towards the Keytruda trial. I'm worried about the side effects and how sick will they make him. I'm also worried about managing side effects while continuing to work. If he can't work what happens to med ins? I honestly wish it were me rather than him going through this. I am so sorry for what you are going through, I hope your kids live close by you and that you have a great support group. Best wishes! Valérie
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- November 3, 2016 at 2:32 pm
Hi Valerie, there are both + and – to trials but one thing that I have liked is how closely they follow you with scans and appointments. Also the ability to get access to the best Immunotherapy drugs available. If the trial is set up Ipi vs Keytruda then your son should have a 50/50 chance to get the Pd-1 arm of the trial. The results of Pd-1 drugs (Keytruda or Nivo) for stage 4 patients has been a game changer. Trials like what your son has a chance to get into for stage 3 patients will also help future patients once the data has been assessed. Best Wishes!!!Ed
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- November 3, 2016 at 2:32 pm
Hi Valerie, there are both + and – to trials but one thing that I have liked is how closely they follow you with scans and appointments. Also the ability to get access to the best Immunotherapy drugs available. If the trial is set up Ipi vs Keytruda then your son should have a 50/50 chance to get the Pd-1 arm of the trial. The results of Pd-1 drugs (Keytruda or Nivo) for stage 4 patients has been a game changer. Trials like what your son has a chance to get into for stage 3 patients will also help future patients once the data has been assessed. Best Wishes!!!Ed
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- November 3, 2016 at 2:32 pm
Hi Valerie, there are both + and – to trials but one thing that I have liked is how closely they follow you with scans and appointments. Also the ability to get access to the best Immunotherapy drugs available. If the trial is set up Ipi vs Keytruda then your son should have a 50/50 chance to get the Pd-1 arm of the trial. The results of Pd-1 drugs (Keytruda or Nivo) for stage 4 patients has been a game changer. Trials like what your son has a chance to get into for stage 3 patients will also help future patients once the data has been assessed. Best Wishes!!!Ed
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- November 3, 2016 at 4:11 pm
Hi again and thanks for the good wishes.
The trial might be this one- and yes would require CLND
Investigators choice v keytruda.
Worth reading the details. You can opt out at any time but there are time scales for screening etc and you might want to clarify which costs the trial picks up – scans etc and which your insurance pays.
Can't predict side effects and ability to work, all so very variable but keytruda is generally well tolerated.
Your Dr should give you the NCT ref number for the proposed trial without a lot of fuss and that should clarify for you the structure of the options.
This other trial
has keytruda before and after surgery but is managed in Pennsylvania. Can't work out where you are but its the only other one I can find that fits the criteria.
You could search through this list
You can modify the search adding your location to cut down the choices. Lots will be totally irrelevant but it would give you an idea of all the possiilities .
Best of luck to you all,
Deb
Do you have the BRAF status yet ?
Sorry if I'm adding more questions b
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- November 3, 2016 at 4:11 pm
Hi again and thanks for the good wishes.
The trial might be this one- and yes would require CLND
Investigators choice v keytruda.
Worth reading the details. You can opt out at any time but there are time scales for screening etc and you might want to clarify which costs the trial picks up – scans etc and which your insurance pays.
Can't predict side effects and ability to work, all so very variable but keytruda is generally well tolerated.
Your Dr should give you the NCT ref number for the proposed trial without a lot of fuss and that should clarify for you the structure of the options.
This other trial
has keytruda before and after surgery but is managed in Pennsylvania. Can't work out where you are but its the only other one I can find that fits the criteria.
You could search through this list
You can modify the search adding your location to cut down the choices. Lots will be totally irrelevant but it would give you an idea of all the possiilities .
Best of luck to you all,
Deb
Do you have the BRAF status yet ?
Sorry if I'm adding more questions b
-
- November 3, 2016 at 4:11 pm
Hi again and thanks for the good wishes.
The trial might be this one- and yes would require CLND
Investigators choice v keytruda.
Worth reading the details. You can opt out at any time but there are time scales for screening etc and you might want to clarify which costs the trial picks up – scans etc and which your insurance pays.
Can't predict side effects and ability to work, all so very variable but keytruda is generally well tolerated.
Your Dr should give you the NCT ref number for the proposed trial without a lot of fuss and that should clarify for you the structure of the options.
This other trial
has keytruda before and after surgery but is managed in Pennsylvania. Can't work out where you are but its the only other one I can find that fits the criteria.
You could search through this list
You can modify the search adding your location to cut down the choices. Lots will be totally irrelevant but it would give you an idea of all the possiilities .
Best of luck to you all,
Deb
Do you have the BRAF status yet ?
Sorry if I'm adding more questions b
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- November 3, 2016 at 12:26 pm
Yes "Gingers" are a big target for melanoma. I have had 3 primaries..
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- November 3, 2016 at 12:26 pm
Yes "Gingers" are a big target for melanoma. I have had 3 primaries..
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- November 3, 2016 at 12:26 pm
Yes "Gingers" are a big target for melanoma. I have had 3 primaries..
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- November 3, 2016 at 3:06 pm
Sorry for what you and Ken are dealing with. You have gotten good advice here. Yes, there are studies that show the CLND is helpful and some say, not so much. Here a link to an article with others within:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html
Lymphedema is nothing to disregard….and can be difficult to manage, though many on this forum do so with grace and full lives. However, I happen to have had two complete lymph node dissections….to both arms…in 2003 and another in 2007 and have never developed lymphedema…just to let you know it does not ALWAYS happen.
Both Ipi and Keytruda have shown good effect in treating patients with active melanoma and as adjuvant. I wish you and your son my best. As hard as things have occasionally been for me in my melanoma journey, I can only imagine what you are going through trying to help your child. Hang in there. Celeste
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- November 3, 2016 at 3:06 pm
Sorry for what you and Ken are dealing with. You have gotten good advice here. Yes, there are studies that show the CLND is helpful and some say, not so much. Here a link to an article with others within:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html
Lymphedema is nothing to disregard….and can be difficult to manage, though many on this forum do so with grace and full lives. However, I happen to have had two complete lymph node dissections….to both arms…in 2003 and another in 2007 and have never developed lymphedema…just to let you know it does not ALWAYS happen.
Both Ipi and Keytruda have shown good effect in treating patients with active melanoma and as adjuvant. I wish you and your son my best. As hard as things have occasionally been for me in my melanoma journey, I can only imagine what you are going through trying to help your child. Hang in there. Celeste
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- November 3, 2016 at 3:06 pm
Sorry for what you and Ken are dealing with. You have gotten good advice here. Yes, there are studies that show the CLND is helpful and some say, not so much. Here a link to an article with others within:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/patients-wtih-microscopically.html
Lymphedema is nothing to disregard….and can be difficult to manage, though many on this forum do so with grace and full lives. However, I happen to have had two complete lymph node dissections….to both arms…in 2003 and another in 2007 and have never developed lymphedema…just to let you know it does not ALWAYS happen.
Both Ipi and Keytruda have shown good effect in treating patients with active melanoma and as adjuvant. I wish you and your son my best. As hard as things have occasionally been for me in my melanoma journey, I can only imagine what you are going through trying to help your child. Hang in there. Celeste
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