› Forums › General Melanoma Community › Stage 3C treatment options
- This topic has 60 replies, 9 voices, and was last updated 7 years, 9 months ago by
Mamapegela.
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- June 19, 2016 at 12:34 am
I have been diagnosed with stage 3C melanoma- brief overview: mole on neck biopsied + for melanoma stage 1 Nov. 2015. Swollen lymph node on left neck feb 2016, biopsied and positive for melanoma april 2016, neck dissection June 2016 with three additional lymph nodes. Now I am stage 3C, recovering from the neck dissection. My melanoma is Braf negative.
I saw my oncologist for the first time yesterday, Dr. Lao at University of Michigan. To my surprise, he is not offering ipilimubab. He feels strongly that the benefit to stage 3 is not proven and the side effects are too potentially dangerous. He offered me close monitoring, interferon or a clinical trial of pembro vs interferon.
I am very interested to see what others in my stage are doing and what your centers are recommending. Based on the above options, I am leaning toward close monitoring as I strongly do not want interferon, but I kind of hate to "do nothing" active that could possibly increase my chances of not having a recurrance.
Thanks so much.
- Replies
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- June 19, 2016 at 12:38 am
To clarify the neck dissection removed 60 nodes of which 3 were positive for melanoma.
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- June 19, 2016 at 12:38 am
To clarify the neck dissection removed 60 nodes of which 3 were positive for melanoma.
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- June 19, 2016 at 12:38 am
To clarify the neck dissection removed 60 nodes of which 3 were positive for melanoma.
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- June 19, 2016 at 3:42 am
Watch and wait is really the first recommended option for stage 3, so doing that is still a good option. You could do things health wise to up your immune system, by eating well, taking care of your body, taking supplements, etc.
I agree, Interferon would not make any sense… it has proven WAY less help than Ipi.. and its side effects are not fun either. It's unfortunate your onc is so against Ipi, I get that it doesn't have a super high percentage, but it's helped a lot of people and it's still more effective than Interferon. I've done well on Ipi, others have had some yucky side effects, but their side effects have been treated well by their doctors. Not everyone experiences terrible side effects from all drugs.
The trial would intrigue me. I wouldn't want to do the Interferon arm, but it would be pretty obvious which one you got and you can stop if it ended up you got on Interferon instead of Pembro, and I think sometimes you can actually switch, maybe I am wrong so someone can correct me if that is not right. Almost seems silly for them to even use Interferon as part of trials anymore anyway.
Those are my thoughts on it, hope everything is uphill from here!
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- June 19, 2016 at 3:42 am
Watch and wait is really the first recommended option for stage 3, so doing that is still a good option. You could do things health wise to up your immune system, by eating well, taking care of your body, taking supplements, etc.
I agree, Interferon would not make any sense… it has proven WAY less help than Ipi.. and its side effects are not fun either. It's unfortunate your onc is so against Ipi, I get that it doesn't have a super high percentage, but it's helped a lot of people and it's still more effective than Interferon. I've done well on Ipi, others have had some yucky side effects, but their side effects have been treated well by their doctors. Not everyone experiences terrible side effects from all drugs.
The trial would intrigue me. I wouldn't want to do the Interferon arm, but it would be pretty obvious which one you got and you can stop if it ended up you got on Interferon instead of Pembro, and I think sometimes you can actually switch, maybe I am wrong so someone can correct me if that is not right. Almost seems silly for them to even use Interferon as part of trials anymore anyway.
Those are my thoughts on it, hope everything is uphill from here!
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- June 19, 2016 at 3:42 am
Watch and wait is really the first recommended option for stage 3, so doing that is still a good option. You could do things health wise to up your immune system, by eating well, taking care of your body, taking supplements, etc.
I agree, Interferon would not make any sense… it has proven WAY less help than Ipi.. and its side effects are not fun either. It's unfortunate your onc is so against Ipi, I get that it doesn't have a super high percentage, but it's helped a lot of people and it's still more effective than Interferon. I've done well on Ipi, others have had some yucky side effects, but their side effects have been treated well by their doctors. Not everyone experiences terrible side effects from all drugs.
The trial would intrigue me. I wouldn't want to do the Interferon arm, but it would be pretty obvious which one you got and you can stop if it ended up you got on Interferon instead of Pembro, and I think sometimes you can actually switch, maybe I am wrong so someone can correct me if that is not right. Almost seems silly for them to even use Interferon as part of trials anymore anyway.
Those are my thoughts on it, hope everything is uphill from here!
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- June 19, 2016 at 11:24 am
Ipi damaged my anteripr pituiatry gland and the damage looks like it is permanent. Although some have suggested that the damage could have been prevented with lower doses, closer montioring and quicker intervention otherrs who have similar damage have a similar tale to mine – it happened very quickly against a background of other side effects that were very mild and raised no flags. I was only given 3mg/kg.
Ipi was very much the right choice for me for a whole clutch of reasons and I was one of the lucky ones – it has knockd back my tumours so that, for now, I am NED. However, living with no anterior pituitary function for the rest of your life is not something to be risked without a great deal of thought.
So I think your physician is giving good advice. Not worth risking the side effects of Ipi. I also agree with you,. It is not worth risking the side effects of interferon.
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- June 19, 2016 at 11:24 am
Ipi damaged my anteripr pituiatry gland and the damage looks like it is permanent. Although some have suggested that the damage could have been prevented with lower doses, closer montioring and quicker intervention otherrs who have similar damage have a similar tale to mine – it happened very quickly against a background of other side effects that were very mild and raised no flags. I was only given 3mg/kg.
Ipi was very much the right choice for me for a whole clutch of reasons and I was one of the lucky ones – it has knockd back my tumours so that, for now, I am NED. However, living with no anterior pituitary function for the rest of your life is not something to be risked without a great deal of thought.
So I think your physician is giving good advice. Not worth risking the side effects of Ipi. I also agree with you,. It is not worth risking the side effects of interferon.
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- June 24, 2016 at 8:42 pm
HI MoriaM- I am wondering.. if you are stage 3C where were your tumors? They were not removed surgically? One of the reasons my Dr. does not want to do Ipi for me is that there is no way to measure its effectiveness since I have no tumors- my positive lymph nodes were removed.
You think that it is not worth it even though you are happy with how it worked for you? I am just trying to get my head around all of this.
Thanks so much
Peggy
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- June 24, 2016 at 9:07 pm
The point of doing an adjuvant treatment (systemic treatment after tumors/cancer has been removed) is to stop a recurrance from happening or prolong a recurrance from happening. A lot of other cancers, like breast cancer, automatically do adjuvant chemo, stage 2 and 3. The idea is to get rid of any microscopic cells that could still be floating around that cannot be seen on scans or tests. And to not have to deal with more cancer in the future. It's been typical in other cancers to do this type of treatment, but for melanoma, Interferon was the only drug approved as an adjuvant treatment before Ipi was approved in October. Since Interferon has proven basically useless, the hope is that Ipi, and the other immunotherapies in trial now for stage 3, will become the standard when someone is diagnosed stage 3. Since it's all still fairly new, we don't have a long term grasp of just how effective it is, but have a good enough idea that it has helped enough people and because of that was approved as an adjuvant treatment. The side effects can be rough, and sometimes as in Moira's case, permanent, but if it stops one from progressing to stage 4, then in my mind it seems worth trying. Hope that helps explain why someone does treatment after having tumors removed 🙂
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- June 24, 2016 at 9:07 pm
The point of doing an adjuvant treatment (systemic treatment after tumors/cancer has been removed) is to stop a recurrance from happening or prolong a recurrance from happening. A lot of other cancers, like breast cancer, automatically do adjuvant chemo, stage 2 and 3. The idea is to get rid of any microscopic cells that could still be floating around that cannot be seen on scans or tests. And to not have to deal with more cancer in the future. It's been typical in other cancers to do this type of treatment, but for melanoma, Interferon was the only drug approved as an adjuvant treatment before Ipi was approved in October. Since Interferon has proven basically useless, the hope is that Ipi, and the other immunotherapies in trial now for stage 3, will become the standard when someone is diagnosed stage 3. Since it's all still fairly new, we don't have a long term grasp of just how effective it is, but have a good enough idea that it has helped enough people and because of that was approved as an adjuvant treatment. The side effects can be rough, and sometimes as in Moira's case, permanent, but if it stops one from progressing to stage 4, then in my mind it seems worth trying. Hope that helps explain why someone does treatment after having tumors removed 🙂
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- June 24, 2016 at 9:07 pm
The point of doing an adjuvant treatment (systemic treatment after tumors/cancer has been removed) is to stop a recurrance from happening or prolong a recurrance from happening. A lot of other cancers, like breast cancer, automatically do adjuvant chemo, stage 2 and 3. The idea is to get rid of any microscopic cells that could still be floating around that cannot be seen on scans or tests. And to not have to deal with more cancer in the future. It's been typical in other cancers to do this type of treatment, but for melanoma, Interferon was the only drug approved as an adjuvant treatment before Ipi was approved in October. Since Interferon has proven basically useless, the hope is that Ipi, and the other immunotherapies in trial now for stage 3, will become the standard when someone is diagnosed stage 3. Since it's all still fairly new, we don't have a long term grasp of just how effective it is, but have a good enough idea that it has helped enough people and because of that was approved as an adjuvant treatment. The side effects can be rough, and sometimes as in Moira's case, permanent, but if it stops one from progressing to stage 4, then in my mind it seems worth trying. Hope that helps explain why someone does treatment after having tumors removed 🙂
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- June 30, 2016 at 2:03 am
Thanks Jenn,
That's where my head was at before going to see my oncologist- if something can stop it from progressing, I want it! But he does not agree and won't give me the Ipi. So all he offered was a trial that is 50/50 chance of interferon or Pembro. I don't want to do interferon! He kind of scared me off from even wanting to do the ipi due to the potential side effects.
I am hoping to be accepted at MD Anderson for a second opinion. I have sent all of my medical records to them and am awaiting an appointment. I will make a decision after that.
Thanks for your input!
Peggy
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- June 30, 2016 at 2:03 am
Thanks Jenn,
That's where my head was at before going to see my oncologist- if something can stop it from progressing, I want it! But he does not agree and won't give me the Ipi. So all he offered was a trial that is 50/50 chance of interferon or Pembro. I don't want to do interferon! He kind of scared me off from even wanting to do the ipi due to the potential side effects.
I am hoping to be accepted at MD Anderson for a second opinion. I have sent all of my medical records to them and am awaiting an appointment. I will make a decision after that.
Thanks for your input!
Peggy
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- July 1, 2016 at 12:44 am
MD Anderson is great and it's always good to get multiple opinions to help you decide what is best for you. The trial isn't a bad idea, you can stop it if you get interferon (you'll know the difference). Hope your trip to MD goes well 🙂
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- July 1, 2016 at 12:44 am
MD Anderson is great and it's always good to get multiple opinions to help you decide what is best for you. The trial isn't a bad idea, you can stop it if you get interferon (you'll know the difference). Hope your trip to MD goes well 🙂
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- July 1, 2016 at 12:44 am
MD Anderson is great and it's always good to get multiple opinions to help you decide what is best for you. The trial isn't a bad idea, you can stop it if you get interferon (you'll know the difference). Hope your trip to MD goes well 🙂
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- June 30, 2016 at 2:03 am
Thanks Jenn,
That's where my head was at before going to see my oncologist- if something can stop it from progressing, I want it! But he does not agree and won't give me the Ipi. So all he offered was a trial that is 50/50 chance of interferon or Pembro. I don't want to do interferon! He kind of scared me off from even wanting to do the ipi due to the potential side effects.
I am hoping to be accepted at MD Anderson for a second opinion. I have sent all of my medical records to them and am awaiting an appointment. I will make a decision after that.
Thanks for your input!
Peggy
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- June 24, 2016 at 8:42 pm
HI MoriaM- I am wondering.. if you are stage 3C where were your tumors? They were not removed surgically? One of the reasons my Dr. does not want to do Ipi for me is that there is no way to measure its effectiveness since I have no tumors- my positive lymph nodes were removed.
You think that it is not worth it even though you are happy with how it worked for you? I am just trying to get my head around all of this.
Thanks so much
Peggy
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- June 24, 2016 at 8:42 pm
HI MoriaM- I am wondering.. if you are stage 3C where were your tumors? They were not removed surgically? One of the reasons my Dr. does not want to do Ipi for me is that there is no way to measure its effectiveness since I have no tumors- my positive lymph nodes were removed.
You think that it is not worth it even though you are happy with how it worked for you? I am just trying to get my head around all of this.
Thanks so much
Peggy
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- June 19, 2016 at 11:24 am
Ipi damaged my anteripr pituiatry gland and the damage looks like it is permanent. Although some have suggested that the damage could have been prevented with lower doses, closer montioring and quicker intervention otherrs who have similar damage have a similar tale to mine – it happened very quickly against a background of other side effects that were very mild and raised no flags. I was only given 3mg/kg.
Ipi was very much the right choice for me for a whole clutch of reasons and I was one of the lucky ones – it has knockd back my tumours so that, for now, I am NED. However, living with no anterior pituitary function for the rest of your life is not something to be risked without a great deal of thought.
So I think your physician is giving good advice. Not worth risking the side effects of Ipi. I also agree with you,. It is not worth risking the side effects of interferon.
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- June 19, 2016 at 12:07 pm
Hi Landonm, if you haven't read the study EORTC 18071 that the approval was based on then take a look at the second link below. 52% of people on study had to stop due to adverse events is a pretty big # and the one to really think about is 1 % of the patients on ipi died due to the treatment. If you could get it at the lower dose that stage 4 patients get 3mg/Kg vs 10mg/kg for the stage 3 patients might help to lower the toxicity. Something to also think about is that the approval was also based on recurrence free survival not overall survival. I think that data is coming sometime down the road but don't quote me on that one. I have a link to an article about Ipi for stage 3 melanoma then a link to the EORTC 18071 study. Best Wishes!!! Ed http://www.medscape.com/viewarticle/853413 http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract
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- June 19, 2016 at 12:07 pm
Hi Landonm, if you haven't read the study EORTC 18071 that the approval was based on then take a look at the second link below. 52% of people on study had to stop due to adverse events is a pretty big # and the one to really think about is 1 % of the patients on ipi died due to the treatment. If you could get it at the lower dose that stage 4 patients get 3mg/Kg vs 10mg/kg for the stage 3 patients might help to lower the toxicity. Something to also think about is that the approval was also based on recurrence free survival not overall survival. I think that data is coming sometime down the road but don't quote me on that one. I have a link to an article about Ipi for stage 3 melanoma then a link to the EORTC 18071 study. Best Wishes!!! Ed http://www.medscape.com/viewarticle/853413 http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract
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- June 19, 2016 at 12:17 pm
Sorry that the links above doesn't work, you can find it by scearching "Medscape oct 28 2015 Yervoy approval stage 3 Melanoma." The second link to the study is available on the medscape page as a link or simply do a search for ( EORTC 18071). I don't know why it didn't work, sorry!!! Ed
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- June 19, 2016 at 12:17 pm
Sorry that the links above doesn't work, you can find it by scearching "Medscape oct 28 2015 Yervoy approval stage 3 Melanoma." The second link to the study is available on the medscape page as a link or simply do a search for ( EORTC 18071). I don't know why it didn't work, sorry!!! Ed
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- June 23, 2016 at 4:36 pm
Thank you- I was able to find that study. I printed it out and am looking it over with my husband. It is crazy how much of this falls to the patient to make decision for outselves but this resource helps so much.
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- June 23, 2016 at 4:36 pm
Thank you- I was able to find that study. I printed it out and am looking it over with my husband. It is crazy how much of this falls to the patient to make decision for outselves but this resource helps so much.
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- June 23, 2016 at 4:36 pm
Thank you- I was able to find that study. I printed it out and am looking it over with my husband. It is crazy how much of this falls to the patient to make decision for outselves but this resource helps so much.
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- June 19, 2016 at 12:17 pm
Sorry that the links above doesn't work, you can find it by scearching "Medscape oct 28 2015 Yervoy approval stage 3 Melanoma." The second link to the study is available on the medscape page as a link or simply do a search for ( EORTC 18071). I don't know why it didn't work, sorry!!! Ed
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- June 19, 2016 at 12:07 pm
Hi Landonm, if you haven't read the study EORTC 18071 that the approval was based on then take a look at the second link below. 52% of people on study had to stop due to adverse events is a pretty big # and the one to really think about is 1 % of the patients on ipi died due to the treatment. If you could get it at the lower dose that stage 4 patients get 3mg/Kg vs 10mg/kg for the stage 3 patients might help to lower the toxicity. Something to also think about is that the approval was also based on recurrence free survival not overall survival. I think that data is coming sometime down the road but don't quote me on that one. I have a link to an article about Ipi for stage 3 melanoma then a link to the EORTC 18071 study. Best Wishes!!! Ed http://www.medscape.com/viewarticle/853413 http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract
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- June 19, 2016 at 3:32 pm
Is there another oncologist you can see to get another opinion? My melanoma oncologist, Dr Kirkwood in Pittsburgh is also recommending interferon for my Stage 3a diagnosis. Since I only had 1 lymph node out of 21 lymph nodes positive for melanoma, I do not qualify for clinical trials. My local oncologist (who was trained by Dr Kirkwood 19 years ago) does not agree with interferon as my only option when there are so many newer drugs out there. He is talking to Dr Kirkwood's Associate and looking into other options for me.
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- June 19, 2016 at 3:32 pm
Is there another oncologist you can see to get another opinion? My melanoma oncologist, Dr Kirkwood in Pittsburgh is also recommending interferon for my Stage 3a diagnosis. Since I only had 1 lymph node out of 21 lymph nodes positive for melanoma, I do not qualify for clinical trials. My local oncologist (who was trained by Dr Kirkwood 19 years ago) does not agree with interferon as my only option when there are so many newer drugs out there. He is talking to Dr Kirkwood's Associate and looking into other options for me.
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- June 23, 2016 at 4:34 pm
Thanks for the information. Please let me know what you end up deciding to do!
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- June 23, 2016 at 4:34 pm
Thanks for the information. Please let me know what you end up deciding to do!
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- June 23, 2016 at 4:34 pm
Thanks for the information. Please let me know what you end up deciding to do!
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- June 19, 2016 at 3:32 pm
Is there another oncologist you can see to get another opinion? My melanoma oncologist, Dr Kirkwood in Pittsburgh is also recommending interferon for my Stage 3a diagnosis. Since I only had 1 lymph node out of 21 lymph nodes positive for melanoma, I do not qualify for clinical trials. My local oncologist (who was trained by Dr Kirkwood 19 years ago) does not agree with interferon as my only option when there are so many newer drugs out there. He is talking to Dr Kirkwood's Associate and looking into other options for me.
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- June 20, 2016 at 1:17 pm
I was diagnosed stage 3B a little over a year ago. At that time, there was one clinical trial that I really wanted to be a part of, but didn't qualify. I was not going to settle for the watch and wait approach. My onc suggested Leukine as a much better substitute for Interferon. According to Mayo, it does the same with way less side effects. I have been on it for 8 months now and am happy to say there are minimal side effects. If you are stuck with only the Interferon option and don't like the watch and wait approach, ask about Leukine.
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- June 20, 2016 at 1:17 pm
I was diagnosed stage 3B a little over a year ago. At that time, there was one clinical trial that I really wanted to be a part of, but didn't qualify. I was not going to settle for the watch and wait approach. My onc suggested Leukine as a much better substitute for Interferon. According to Mayo, it does the same with way less side effects. I have been on it for 8 months now and am happy to say there are minimal side effects. If you are stuck with only the Interferon option and don't like the watch and wait approach, ask about Leukine.
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- June 20, 2016 at 1:17 pm
I was diagnosed stage 3B a little over a year ago. At that time, there was one clinical trial that I really wanted to be a part of, but didn't qualify. I was not going to settle for the watch and wait approach. My onc suggested Leukine as a much better substitute for Interferon. According to Mayo, it does the same with way less side effects. I have been on it for 8 months now and am happy to say there are minimal side effects. If you are stuck with only the Interferon option and don't like the watch and wait approach, ask about Leukine.
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- June 20, 2016 at 11:08 pm
Thanks for all of the thoughtful responses. I am considering a second opinion at MD Anderson… It is all pretty confusing. I also have "spots" that they are watching- I am to have my next imaging in 2 months (which will be 4 months from my intial scans) to follow up on a couple of "suspicious" lymph nodes on my right neck (disecction was on my left neck), 2 small lung nodules and a spot on my liver which was too small to say much about until follow up scans.
So, maybe this is all for naught if anything has progressed or looks like more melanoma.
This diagnosis is a real bear. Thank you everyone.
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- June 20, 2016 at 11:08 pm
Thanks for all of the thoughtful responses. I am considering a second opinion at MD Anderson… It is all pretty confusing. I also have "spots" that they are watching- I am to have my next imaging in 2 months (which will be 4 months from my intial scans) to follow up on a couple of "suspicious" lymph nodes on my right neck (disecction was on my left neck), 2 small lung nodules and a spot on my liver which was too small to say much about until follow up scans.
So, maybe this is all for naught if anything has progressed or looks like more melanoma.
This diagnosis is a real bear. Thank you everyone.
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- June 20, 2016 at 11:08 pm
Thanks for all of the thoughtful responses. I am considering a second opinion at MD Anderson… It is all pretty confusing. I also have "spots" that they are watching- I am to have my next imaging in 2 months (which will be 4 months from my intial scans) to follow up on a couple of "suspicious" lymph nodes on my right neck (disecction was on my left neck), 2 small lung nodules and a spot on my liver which was too small to say much about until follow up scans.
So, maybe this is all for naught if anything has progressed or looks like more melanoma.
This diagnosis is a real bear. Thank you everyone.
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- June 23, 2016 at 4:33 pm
Yes I did have a brain MRI done initally and it was negative. Hoping it stays that way!!
Thank you
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- June 23, 2016 at 4:33 pm
Yes I did have a brain MRI done initally and it was negative. Hoping it stays that way!!
Thank you
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- June 23, 2016 at 4:33 pm
Yes I did have a brain MRI done initally and it was negative. Hoping it stays that way!!
Thank you
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- July 23, 2016 at 12:28 pm
Hi Peggy,
Currently, my husband is stage 3b after neck dissection with two positive malignant lymph nodes. We just got a call from the radiation oncologist saying that his margins were ok but he has extra capsular extension on these nodes, so she is recommending 5x sessions of radiation to try and stop recurrence in the neck area. His initial primary was on his scalp and it was ulcerated with a stage 2 T2bNOMO, but now with the recurrence he moves up in stages. Our own oncologist wants us to go on interferon as well but we are not convinced with its overall benefit, losing out on a year of quality life. Were your tumours ulcerated or did you have the pathology indicating the ECE? We are wondering about the same trial just to try and get the benefit of keytruda, please advise what your decision will be. We are also waiting for a second opinion from another oncologist in Torinto who away on vacation till early August, but I believe you have 90 days from surgery date to get into trial. That trial originally was comparing interferon, ipi and pem but since has taken out out ipi so it is a 50-50 chance for the remaining options.
Kind regards and we wishi you all the best,
Delores
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- July 23, 2016 at 12:29 pm
Oops that was suppose to say 25 sessions of radiation
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- July 23, 2016 at 12:29 pm
Oops that was suppose to say 25 sessions of radiation
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- July 23, 2016 at 12:29 pm
Oops that was suppose to say 25 sessions of radiation
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- July 28, 2016 at 4:19 am
Hi Delores- I apologize for not getting back to tis sooner. I have just gotten back from MD Anderson for a second opinion, as well as just today getting approval from my insurance co. for being able to participate in the S1404 clinical trial!
My primary was on my neck and as I said I am a 3C. None of my nodes had extracapsular extension or ulceration. However, I did have a large cancer burden with one of the nodes actually being referred to as a tumor by Dr. Glitza due to it being 3cm in diameter.
After speaking with Dr. Glitza at MD Anderson I have decided to do the trial. The trial does still offer ipi but many oncologist are apparently not recommending it or allowing their stage 3 patients to recieve it. Dr. Lao at U of M whom I saw first would only give the interferon if in that arm. However, Dr. Glitza at U of M does give ipi to select stage 3 patients (albeit at the lower dose than in the trial). After weighing all of the pros and cons I am 90% sure that I will do the trial and take the ipi if I get that arm. There is some evidence that IF you are going to respond to the immunotherapy drugs that even if you can only get through a few doses it may be enough.
Dr. Glitza told me that I have a 76-80% chance of recurrance of melanoma. I want to try to lessen that chance!
I hope this has helped. It is all so overwhelming sometimes but this is a great place to come and get hear from others who really understand and so many who have such knowledge and wisdom.
Wishing you the best as well- let me know how it is going!
Peggy
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- July 28, 2016 at 4:19 am
Hi Delores- I apologize for not getting back to tis sooner. I have just gotten back from MD Anderson for a second opinion, as well as just today getting approval from my insurance co. for being able to participate in the S1404 clinical trial!
My primary was on my neck and as I said I am a 3C. None of my nodes had extracapsular extension or ulceration. However, I did have a large cancer burden with one of the nodes actually being referred to as a tumor by Dr. Glitza due to it being 3cm in diameter.
After speaking with Dr. Glitza at MD Anderson I have decided to do the trial. The trial does still offer ipi but many oncologist are apparently not recommending it or allowing their stage 3 patients to recieve it. Dr. Lao at U of M whom I saw first would only give the interferon if in that arm. However, Dr. Glitza at U of M does give ipi to select stage 3 patients (albeit at the lower dose than in the trial). After weighing all of the pros and cons I am 90% sure that I will do the trial and take the ipi if I get that arm. There is some evidence that IF you are going to respond to the immunotherapy drugs that even if you can only get through a few doses it may be enough.
Dr. Glitza told me that I have a 76-80% chance of recurrance of melanoma. I want to try to lessen that chance!
I hope this has helped. It is all so overwhelming sometimes but this is a great place to come and get hear from others who really understand and so many who have such knowledge and wisdom.
Wishing you the best as well- let me know how it is going!
Peggy
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- July 28, 2016 at 4:19 am
Hi Delores- I apologize for not getting back to tis sooner. I have just gotten back from MD Anderson for a second opinion, as well as just today getting approval from my insurance co. for being able to participate in the S1404 clinical trial!
My primary was on my neck and as I said I am a 3C. None of my nodes had extracapsular extension or ulceration. However, I did have a large cancer burden with one of the nodes actually being referred to as a tumor by Dr. Glitza due to it being 3cm in diameter.
After speaking with Dr. Glitza at MD Anderson I have decided to do the trial. The trial does still offer ipi but many oncologist are apparently not recommending it or allowing their stage 3 patients to recieve it. Dr. Lao at U of M whom I saw first would only give the interferon if in that arm. However, Dr. Glitza at U of M does give ipi to select stage 3 patients (albeit at the lower dose than in the trial). After weighing all of the pros and cons I am 90% sure that I will do the trial and take the ipi if I get that arm. There is some evidence that IF you are going to respond to the immunotherapy drugs that even if you can only get through a few doses it may be enough.
Dr. Glitza told me that I have a 76-80% chance of recurrance of melanoma. I want to try to lessen that chance!
I hope this has helped. It is all so overwhelming sometimes but this is a great place to come and get hear from others who really understand and so many who have such knowledge and wisdom.
Wishing you the best as well- let me know how it is going!
Peggy
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- July 23, 2016 at 12:28 pm
Hi Peggy,
Currently, my husband is stage 3b after neck dissection with two positive malignant lymph nodes. We just got a call from the radiation oncologist saying that his margins were ok but he has extra capsular extension on these nodes, so she is recommending 5x sessions of radiation to try and stop recurrence in the neck area. His initial primary was on his scalp and it was ulcerated with a stage 2 T2bNOMO, but now with the recurrence he moves up in stages. Our own oncologist wants us to go on interferon as well but we are not convinced with its overall benefit, losing out on a year of quality life. Were your tumours ulcerated or did you have the pathology indicating the ECE? We are wondering about the same trial just to try and get the benefit of keytruda, please advise what your decision will be. We are also waiting for a second opinion from another oncologist in Torinto who away on vacation till early August, but I believe you have 90 days from surgery date to get into trial. That trial originally was comparing interferon, ipi and pem but since has taken out out ipi so it is a 50-50 chance for the remaining options.
Kind regards and we wishi you all the best,
Delores
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- July 23, 2016 at 12:28 pm
Hi Peggy,
Currently, my husband is stage 3b after neck dissection with two positive malignant lymph nodes. We just got a call from the radiation oncologist saying that his margins were ok but he has extra capsular extension on these nodes, so she is recommending 5x sessions of radiation to try and stop recurrence in the neck area. His initial primary was on his scalp and it was ulcerated with a stage 2 T2bNOMO, but now with the recurrence he moves up in stages. Our own oncologist wants us to go on interferon as well but we are not convinced with its overall benefit, losing out on a year of quality life. Were your tumours ulcerated or did you have the pathology indicating the ECE? We are wondering about the same trial just to try and get the benefit of keytruda, please advise what your decision will be. We are also waiting for a second opinion from another oncologist in Torinto who away on vacation till early August, but I believe you have 90 days from surgery date to get into trial. That trial originally was comparing interferon, ipi and pem but since has taken out out ipi so it is a 50-50 chance for the remaining options.
Kind regards and we wishi you all the best,
Delores
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Tagged: cutaneous melanoma
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