› Forums › General Melanoma Community › Anybody heard interferon is 40% efficient
- This topic has 48 replies, 9 voices, and was last updated 7 years, 5 months ago by
Carole K.
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- November 15, 2016 at 11:21 pm
in the case of ulcerated primary tumors? And possibly low node burden? Got back from seeing a second oncologist today. Textbook answers. Who can blame them? But the thing about interferon is new to me. Celeste?
He also told me that since my tumour was ulcerated, there are malignent cells in my bloodstream. Is this how it works?
I am afraid to post again here but what the heck, for those of you fed up, you can just pass me by.
For the others, I am truly grateful for your replies.
Sincerely
Sole
- Replies
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- November 15, 2016 at 11:34 pm
Hi Sole, just remove a (0) and you have about the right number for interferon!!! 2% to 4% ( and that might be generous) and you are right that the % worked best in the ulcerated population , now compare that with the Ipi at 10mg/kg that was reported at ESMO which came in around 30% overall survival in the adjuvant setting with some major concerns with toxicity with 4 deaths reported. I am pretty sure on the ipi # but you can look them up in the recently published data from ESMO. I have no idea how to address the comment about malignent cells in your bloodstream!!!! Don't worry about posting Sole, many of us have been in your shoes, we get the frustration that you have been feeling while you look for answers!!! Best Wishes!!! Ed
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- November 15, 2016 at 11:34 pm
Hi Sole, just remove a (0) and you have about the right number for interferon!!! 2% to 4% ( and that might be generous) and you are right that the % worked best in the ulcerated population , now compare that with the Ipi at 10mg/kg that was reported at ESMO which came in around 30% overall survival in the adjuvant setting with some major concerns with toxicity with 4 deaths reported. I am pretty sure on the ipi # but you can look them up in the recently published data from ESMO. I have no idea how to address the comment about malignent cells in your bloodstream!!!! Don't worry about posting Sole, many of us have been in your shoes, we get the frustration that you have been feeling while you look for answers!!! Best Wishes!!! Ed
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- November 16, 2016 at 1:04 am
Thanks a million Ed. So I got a bullshit answer from this oncologist basically. That seemed odd anyway. And he is a top melanoma guy supposedly.
As for adjuvant ipi, do you know of a way for Canadians to get that? I wouldn't do it at 10mg but at 3mg. Does Ontario offer it?
I got better service today in a nicer center with possibly better or at the very least more experienced dermatologist. But the choices remain the same.
I have to give him my answer next Wednesday if I want to do interferon or CLND and clinical trial of interferon or pembro.
I am getting tired of this. But I guess I'll try a third opinion.
The thing is I feel like a sitting duck waiting to become stage 4 and try the very limited drugs we can afford in Quebec, and die. Oncologist was pretty clear about when one becomes stage 4…
Given that course of action, maybe refusing everything is not such a bad idea. My initial tumour was so bad that maybe just letting go of everything is better. But at 48, I admit that I am having the challenge of my life.
Will the remainder of my life be better trying to fight this? This is obviously what you, warriors, are doing with success so far. I just wonder. In Quebec…
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- November 16, 2016 at 1:04 am
Thanks a million Ed. So I got a bullshit answer from this oncologist basically. That seemed odd anyway. And he is a top melanoma guy supposedly.
As for adjuvant ipi, do you know of a way for Canadians to get that? I wouldn't do it at 10mg but at 3mg. Does Ontario offer it?
I got better service today in a nicer center with possibly better or at the very least more experienced dermatologist. But the choices remain the same.
I have to give him my answer next Wednesday if I want to do interferon or CLND and clinical trial of interferon or pembro.
I am getting tired of this. But I guess I'll try a third opinion.
The thing is I feel like a sitting duck waiting to become stage 4 and try the very limited drugs we can afford in Quebec, and die. Oncologist was pretty clear about when one becomes stage 4…
Given that course of action, maybe refusing everything is not such a bad idea. My initial tumour was so bad that maybe just letting go of everything is better. But at 48, I admit that I am having the challenge of my life.
Will the remainder of my life be better trying to fight this? This is obviously what you, warriors, are doing with success so far. I just wonder. In Quebec…
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- November 16, 2016 at 1:04 am
Thanks a million Ed. So I got a bullshit answer from this oncologist basically. That seemed odd anyway. And he is a top melanoma guy supposedly.
As for adjuvant ipi, do you know of a way for Canadians to get that? I wouldn't do it at 10mg but at 3mg. Does Ontario offer it?
I got better service today in a nicer center with possibly better or at the very least more experienced dermatologist. But the choices remain the same.
I have to give him my answer next Wednesday if I want to do interferon or CLND and clinical trial of interferon or pembro.
I am getting tired of this. But I guess I'll try a third opinion.
The thing is I feel like a sitting duck waiting to become stage 4 and try the very limited drugs we can afford in Quebec, and die. Oncologist was pretty clear about when one becomes stage 4…
Given that course of action, maybe refusing everything is not such a bad idea. My initial tumour was so bad that maybe just letting go of everything is better. But at 48, I admit that I am having the challenge of my life.
Will the remainder of my life be better trying to fight this? This is obviously what you, warriors, are doing with success so far. I just wonder. In Quebec…
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- November 16, 2016 at 1:26 am
Hi sole, now that I see you used pembrolizumab in your response, it makes me think that maybe you got mixed up with what he said to you. Pembrolizumab has a 40% response rate or pretty close to 40% in stage 4 patients. The data can get pretty confusing especially when you meet an oncologist for the first time.Ed
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- November 16, 2016 at 1:26 am
Hi sole, now that I see you used pembrolizumab in your response, it makes me think that maybe you got mixed up with what he said to you. Pembrolizumab has a 40% response rate or pretty close to 40% in stage 4 patients. The data can get pretty confusing especially when you meet an oncologist for the first time.Ed
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- November 16, 2016 at 1:26 am
Hi sole, now that I see you used pembrolizumab in your response, it makes me think that maybe you got mixed up with what he said to you. Pembrolizumab has a 40% response rate or pretty close to 40% in stage 4 patients. The data can get pretty confusing especially when you meet an oncologist for the first time.Ed
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- November 16, 2016 at 3:07 am
Ed,
He specifically said 40% for interferon. I know what you mean, I know the numbers with pembro. Then he went on to admit that with the majority of people, it was more ´ike 10% but ulcerated people, 40%!!!
He's playing me obviously. Or he wants to convince me to do it badly.
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- November 16, 2016 at 3:07 am
Ed,
He specifically said 40% for interferon. I know what you mean, I know the numbers with pembro. Then he went on to admit that with the majority of people, it was more ´ike 10% but ulcerated people, 40%!!!
He's playing me obviously. Or he wants to convince me to do it badly.
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- November 16, 2016 at 3:07 am
Ed,
He specifically said 40% for interferon. I know what you mean, I know the numbers with pembro. Then he went on to admit that with the majority of people, it was more ´ike 10% but ulcerated people, 40%!!!
He's playing me obviously. Or he wants to convince me to do it badly.
-
- November 16, 2016 at 4:40 am
Hi Sole,
Tough decision. I chose the CNLD and clinical trial of Pembro or interferon in Vancouver. That way at least I had a 50% chance of getting on Pembro which I believe may be better that IP or at least less toxic. However I drew the interferon arm and only lasted a week. But you may have better luck. Of course the downside is having the CNLD. Can't advise on that one. It was tough but I got through it. Just my thoughts. Good luck.
Stacie
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- November 16, 2016 at 4:40 am
Hi Sole,
Tough decision. I chose the CNLD and clinical trial of Pembro or interferon in Vancouver. That way at least I had a 50% chance of getting on Pembro which I believe may be better that IP or at least less toxic. However I drew the interferon arm and only lasted a week. But you may have better luck. Of course the downside is having the CNLD. Can't advise on that one. It was tough but I got through it. Just my thoughts. Good luck.
Stacie
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- November 16, 2016 at 4:40 am
Hi Sole,
Tough decision. I chose the CNLD and clinical trial of Pembro or interferon in Vancouver. That way at least I had a 50% chance of getting on Pembro which I believe may be better that IP or at least less toxic. However I drew the interferon arm and only lasted a week. But you may have better luck. Of course the downside is having the CNLD. Can't advise on that one. It was tough but I got through it. Just my thoughts. Good luck.
Stacie
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- November 15, 2016 at 11:34 pm
Hi Sole, just remove a (0) and you have about the right number for interferon!!! 2% to 4% ( and that might be generous) and you are right that the % worked best in the ulcerated population , now compare that with the Ipi at 10mg/kg that was reported at ESMO which came in around 30% overall survival in the adjuvant setting with some major concerns with toxicity with 4 deaths reported. I am pretty sure on the ipi # but you can look them up in the recently published data from ESMO. I have no idea how to address the comment about malignent cells in your bloodstream!!!! Don't worry about posting Sole, many of us have been in your shoes, we get the frustration that you have been feeling while you look for answers!!! Best Wishes!!! Ed
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- November 16, 2016 at 12:38 am
Hi Sole,
My favorite mouseketeer gave you an accurate report per the info I have. Interferon does have its best effects in folks with ulcerated lesions. However, in all the many years I have been following this research, I have never seen 40% response rate and interferon linked together. Sorry. But that's what I've learned over the past 13 years living in melanoma world. Hang in there. Celeste
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- November 16, 2016 at 12:38 am
Hi Sole,
My favorite mouseketeer gave you an accurate report per the info I have. Interferon does have its best effects in folks with ulcerated lesions. However, in all the many years I have been following this research, I have never seen 40% response rate and interferon linked together. Sorry. But that's what I've learned over the past 13 years living in melanoma world. Hang in there. Celeste
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- November 16, 2016 at 12:38 am
Hi Sole,
My favorite mouseketeer gave you an accurate report per the info I have. Interferon does have its best effects in folks with ulcerated lesions. However, in all the many years I have been following this research, I have never seen 40% response rate and interferon linked together. Sorry. But that's what I've learned over the past 13 years living in melanoma world. Hang in there. Celeste
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- November 16, 2016 at 3:42 am
Sole – I was diagnosed just over 2 years ago as a Stage 3A. I did Interferon for a year. I have read every possible bit of information about Interferon that I could find. AT THAT TIME, it was the only game in town (or any town) for Stage 3A patients.
The reason that I did Interferon was because for 3A patients, there is a 30% chance of reoccurrence (moving to Stage 4). The best stats that I saw was that patients delayed reoccurrence by about 6-12 months AND increase the overall survivability by about 5%.
To me that benefit was worth the extreme pain of 12 months on Interferon. So at the 2 year mark I am currently NED. Was it Interferon that helped me….we will never know for sure. If the only benefit that I received was the time for doctors to practice their craft with all of these new drugs…it was worth it.
But did I see anything approaching 40% in terms of benefit in anything I read…no way. If anything 40% was the low end number for folks that stopped the treatment mid-course.
I can't speak for your location in terms of what is available….but I would strongly tend to some of the new trials that are available for 3A/B/C patients in the adjunctive setting.
Best wishes
Michel
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- November 16, 2016 at 3:42 am
Sole – I was diagnosed just over 2 years ago as a Stage 3A. I did Interferon for a year. I have read every possible bit of information about Interferon that I could find. AT THAT TIME, it was the only game in town (or any town) for Stage 3A patients.
The reason that I did Interferon was because for 3A patients, there is a 30% chance of reoccurrence (moving to Stage 4). The best stats that I saw was that patients delayed reoccurrence by about 6-12 months AND increase the overall survivability by about 5%.
To me that benefit was worth the extreme pain of 12 months on Interferon. So at the 2 year mark I am currently NED. Was it Interferon that helped me….we will never know for sure. If the only benefit that I received was the time for doctors to practice their craft with all of these new drugs…it was worth it.
But did I see anything approaching 40% in terms of benefit in anything I read…no way. If anything 40% was the low end number for folks that stopped the treatment mid-course.
I can't speak for your location in terms of what is available….but I would strongly tend to some of the new trials that are available for 3A/B/C patients in the adjunctive setting.
Best wishes
Michel
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- November 16, 2016 at 3:42 am
Sole – I was diagnosed just over 2 years ago as a Stage 3A. I did Interferon for a year. I have read every possible bit of information about Interferon that I could find. AT THAT TIME, it was the only game in town (or any town) for Stage 3A patients.
The reason that I did Interferon was because for 3A patients, there is a 30% chance of reoccurrence (moving to Stage 4). The best stats that I saw was that patients delayed reoccurrence by about 6-12 months AND increase the overall survivability by about 5%.
To me that benefit was worth the extreme pain of 12 months on Interferon. So at the 2 year mark I am currently NED. Was it Interferon that helped me….we will never know for sure. If the only benefit that I received was the time for doctors to practice their craft with all of these new drugs…it was worth it.
But did I see anything approaching 40% in terms of benefit in anything I read…no way. If anything 40% was the low end number for folks that stopped the treatment mid-course.
I can't speak for your location in terms of what is available….but I would strongly tend to some of the new trials that are available for 3A/B/C patients in the adjunctive setting.
Best wishes
Michel
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- November 16, 2016 at 1:05 pm
Thanks Michel
The oncologist told me also I had 30% of recurrence at 3b… He was reading my file while I was in front of him… I think my odds of recurrence are more likely to approach 50% than 30… Somebody corroborate this please…
3a is a much better place to be than 3b. And not all stage 3 are created equal, far from it. I am a grade 3 tumor. Is your tumor a grade 3 too?
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- November 16, 2016 at 1:05 pm
Thanks Michel
The oncologist told me also I had 30% of recurrence at 3b… He was reading my file while I was in front of him… I think my odds of recurrence are more likely to approach 50% than 30… Somebody corroborate this please…
3a is a much better place to be than 3b. And not all stage 3 are created equal, far from it. I am a grade 3 tumor. Is your tumor a grade 3 too?
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- November 16, 2016 at 1:05 pm
Thanks Michel
The oncologist told me also I had 30% of recurrence at 3b… He was reading my file while I was in front of him… I think my odds of recurrence are more likely to approach 50% than 30… Somebody corroborate this please…
3a is a much better place to be than 3b. And not all stage 3 are created equal, far from it. I am a grade 3 tumor. Is your tumor a grade 3 too?
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- November 16, 2016 at 5:04 pm
Hi Sole, ?
Have they given you the trial number NCT XXXXXXX ?
Think it must be patient / physician choice v pembro AND that seems to be ipi or interferon v pembro ?
Can you get them to explain why ipi not an option in the trial ?
Canadian melanoma sites seem to talk about ipi as immunotherapy choices…
Really sympathise as I had CLND but macro tumours so stage 3b- and progressed to stage iv within 9 months via a pembro v placebo trial for stage 3- on placebo sadly…but ticked lots on the pembro side effect list along the way- anemia, weight loss, rashes, joint pains, fever at start etc sadly pembro blamed for much but this was not the case !
Know you've changed diet- is your VIt D optimised ?
You keep on asking questions … we really do get it.
Deb
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- November 17, 2016 at 8:54 am
HI Sole,
You make my blood boil reading that an onoclogist told you there was a 40% success rate with INF> I was very active on MPIP from 1999 -2006/2007. When I came here the Pharma ketp sayng they had aa 12% succss rate. I could no understand how they arrived at this conclusion Long story short after keeping track of people on MPIP who did INf ( which at tht time was pretty much all that was available), I starte keeeping track I knew something was wrong, far too many, especially young people, Melanowa exaceerbated. I wrote to the pharma and to my state assemblyman reagrding my personal study. I found on here that about 2% of the patients had asuccess. I never hearad from the pharma, whose headquarters were about 5 minutes from my house and I had asked for a meeting with a certain VP, Needless to say, My request was ignored,. I never heard from them or my assemblyman About a year or so later a gentleman who was also very active on MPIP, Don Winters, sent me a message sayig he wought I woud be interested in ths release. It stateed that due to the review of all data on INF, they found there was a mistake. The success rate was 1-2%, not the 12% they thought. HELLO.. I was enraged I told them to come to this website and do a study They wuld find their success different, INF is now in the hans of Merck Phamaceutica Contact the directly I have and they have replied to me.
I am so happy you are your own advocate Perservere, do your research and make your decision. I know it's hard but in the end, know you will make the decision best for YOU,
NEVER EVER EVER GIVE UP HOPE. NED 15 Years and 11 months ftere multiple lessions to both lungs and one brain met.
Best of luck
Love and Light
Carole K
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- November 17, 2016 at 8:54 am
HI Sole,
You make my blood boil reading that an onoclogist told you there was a 40% success rate with INF> I was very active on MPIP from 1999 -2006/2007. When I came here the Pharma ketp sayng they had aa 12% succss rate. I could no understand how they arrived at this conclusion Long story short after keeping track of people on MPIP who did INf ( which at tht time was pretty much all that was available), I starte keeeping track I knew something was wrong, far too many, especially young people, Melanowa exaceerbated. I wrote to the pharma and to my state assemblyman reagrding my personal study. I found on here that about 2% of the patients had asuccess. I never hearad from the pharma, whose headquarters were about 5 minutes from my house and I had asked for a meeting with a certain VP, Needless to say, My request was ignored,. I never heard from them or my assemblyman About a year or so later a gentleman who was also very active on MPIP, Don Winters, sent me a message sayig he wought I woud be interested in ths release. It stateed that due to the review of all data on INF, they found there was a mistake. The success rate was 1-2%, not the 12% they thought. HELLO.. I was enraged I told them to come to this website and do a study They wuld find their success different, INF is now in the hans of Merck Phamaceutica Contact the directly I have and they have replied to me.
I am so happy you are your own advocate Perservere, do your research and make your decision. I know it's hard but in the end, know you will make the decision best for YOU,
NEVER EVER EVER GIVE UP HOPE. NED 15 Years and 11 months ftere multiple lessions to both lungs and one brain met.
Best of luck
Love and Light
Carole K
-
- November 17, 2016 at 8:54 am
HI Sole,
You make my blood boil reading that an onoclogist told you there was a 40% success rate with INF> I was very active on MPIP from 1999 -2006/2007. When I came here the Pharma ketp sayng they had aa 12% succss rate. I could no understand how they arrived at this conclusion Long story short after keeping track of people on MPIP who did INf ( which at tht time was pretty much all that was available), I starte keeeping track I knew something was wrong, far too many, especially young people, Melanowa exaceerbated. I wrote to the pharma and to my state assemblyman reagrding my personal study. I found on here that about 2% of the patients had asuccess. I never hearad from the pharma, whose headquarters were about 5 minutes from my house and I had asked for a meeting with a certain VP, Needless to say, My request was ignored,. I never heard from them or my assemblyman About a year or so later a gentleman who was also very active on MPIP, Don Winters, sent me a message sayig he wought I woud be interested in ths release. It stateed that due to the review of all data on INF, they found there was a mistake. The success rate was 1-2%, not the 12% they thought. HELLO.. I was enraged I told them to come to this website and do a study They wuld find their success different, INF is now in the hans of Merck Phamaceutica Contact the directly I have and they have replied to me.
I am so happy you are your own advocate Perservere, do your research and make your decision. I know it's hard but in the end, know you will make the decision best for YOU,
NEVER EVER EVER GIVE UP HOPE. NED 15 Years and 11 months ftere multiple lessions to both lungs and one brain met.
Best of luck
Love and Light
Carole K
-
- November 17, 2016 at 7:30 pm
I am still in limbo for clinical trials:
1) have not resolved my low platelet count (giant and possibly aggregate. Genetic or auto-immune disease?)
2) need to have groin CLND to do trials but have one lymph node with "rare isolated cells ". May not even qualify with so low burden… I dont know
Am so nervous and can't function much.
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- November 18, 2016 at 9:04 am
HI Sole,
I am so so sorry for all you are going thrugh. May I ask where you have gone for an opinion? I know how difficult and friightening this part is of the jurney. Do you have a good support team around you? Please know I am here for yuou and feel free to email me. IN the subject please write MPIP I sometimes will not oepn and emai if I don't recognize the email. Do you go to fb There are several support groups there as well.
Sendign you hugs and lots of love and know YOU WILL MAKE THE RIGHT DECISION FOR YOU. Once you do NEVER EVER EVER LOOK BACK.
Big hugs and lots of love
Love and Light
Carole K
-
- November 18, 2016 at 9:04 am
HI Sole,
I am so so sorry for all you are going thrugh. May I ask where you have gone for an opinion? I know how difficult and friightening this part is of the jurney. Do you have a good support team around you? Please know I am here for yuou and feel free to email me. IN the subject please write MPIP I sometimes will not oepn and emai if I don't recognize the email. Do you go to fb There are several support groups there as well.
Sendign you hugs and lots of love and know YOU WILL MAKE THE RIGHT DECISION FOR YOU. Once you do NEVER EVER EVER LOOK BACK.
Big hugs and lots of love
Love and Light
Carole K
-
- November 18, 2016 at 9:04 am
HI Sole,
I am so so sorry for all you are going thrugh. May I ask where you have gone for an opinion? I know how difficult and friightening this part is of the jurney. Do you have a good support team around you? Please know I am here for yuou and feel free to email me. IN the subject please write MPIP I sometimes will not oepn and emai if I don't recognize the email. Do you go to fb There are several support groups there as well.
Sendign you hugs and lots of love and know YOU WILL MAKE THE RIGHT DECISION FOR YOU. Once you do NEVER EVER EVER LOOK BACK.
Big hugs and lots of love
Love and Light
Carole K
-
- November 17, 2016 at 7:30 pm
I am still in limbo for clinical trials:
1) have not resolved my low platelet count (giant and possibly aggregate. Genetic or auto-immune disease?)
2) need to have groin CLND to do trials but have one lymph node with "rare isolated cells ". May not even qualify with so low burden… I dont know
Am so nervous and can't function much.
-
- November 17, 2016 at 7:30 pm
I am still in limbo for clinical trials:
1) have not resolved my low platelet count (giant and possibly aggregate. Genetic or auto-immune disease?)
2) need to have groin CLND to do trials but have one lymph node with "rare isolated cells ". May not even qualify with so low burden… I dont know
Am so nervous and can't function much.
-
- November 16, 2016 at 5:04 pm
Hi Sole, ?
Have they given you the trial number NCT XXXXXXX ?
Think it must be patient / physician choice v pembro AND that seems to be ipi or interferon v pembro ?
Can you get them to explain why ipi not an option in the trial ?
Canadian melanoma sites seem to talk about ipi as immunotherapy choices…
Really sympathise as I had CLND but macro tumours so stage 3b- and progressed to stage iv within 9 months via a pembro v placebo trial for stage 3- on placebo sadly…but ticked lots on the pembro side effect list along the way- anemia, weight loss, rashes, joint pains, fever at start etc sadly pembro blamed for much but this was not the case !
Know you've changed diet- is your VIt D optimised ?
You keep on asking questions … we really do get it.
Deb
-
- November 16, 2016 at 5:04 pm
Hi Sole, ?
Have they given you the trial number NCT XXXXXXX ?
Think it must be patient / physician choice v pembro AND that seems to be ipi or interferon v pembro ?
Can you get them to explain why ipi not an option in the trial ?
Canadian melanoma sites seem to talk about ipi as immunotherapy choices…
Really sympathise as I had CLND but macro tumours so stage 3b- and progressed to stage iv within 9 months via a pembro v placebo trial for stage 3- on placebo sadly…but ticked lots on the pembro side effect list along the way- anemia, weight loss, rashes, joint pains, fever at start etc sadly pembro blamed for much but this was not the case !
Know you've changed diet- is your VIt D optimised ?
You keep on asking questions … we really do get it.
Deb
-
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