Interferon therapy: Would you do it again?

This topic has 30 replies, 6 voices, and was last updated 9 years, 8 months ago by ET-SF.

Post

- August 27, 2015 at 2:47 pm
- Quote
ET-SF
Participant
Hi all,

Good news! The path reports have come back, and it appears ET dodged a bullet for now. Her SLN biopsy came back negative, and the WAE margins were confirmed clean. We still haven't gotten to the PET/CT full body scan, which has to be ordered up by an oncologist. We don't even have an oncologist yet, but we're trying to set up wit the ONLY melanoma specialist/program/clinic on our insurance plan. Meanwhile, we're wrapping our heads around some big questions. Among these….

INTERFERON THERAPY! Considering the size of the tumor (Breslow 9mm) and other findings of the initial path (microsatellitosis, lymphatic invasion, perineural invasion), I think ET would qualify. There's also a Phase III clinical trial for a multi-antigen vaccine, but I can't find info as to its efficacy so far, and ET could end up in the control group, getting nothing. Interferon would be something she'd be guaranteed to receive, with limited improvement of her odds. My question to all of you who have undergone this therapy is…

Would you do it again?

Or would you take a stab at the vaccine trial, knowing that you might end up in the control group?

(I believe it's either/or, as interferon would disqualify a person for the vaccine trial.)

Thanks for any input/insight you can offer!

SF and ET

Viewing 17 reply threads

Replies

- - August 27, 2015 at 6:02 pm
  - Quote
  ed williams
  Participant
  With the advantage of hind sight I would have to say "No" to doing Interferon again. That being said, when I made the decision to do it back in 2012 , the only option given was do nothing or Interferon. Most of the experts that I have heard speak about vaccines have said that they have not worked in the past. The only one that has shown positive resulst is t-vec(based on the herpes virus) and you have to have Melanoma that they can inject it into. One Dr. that I follow on Twitter is Dr.Omid Hamid of the Angeles Clinic. He has many presentation on youtube, where he talks about what is new in Melanoma. You can search under his Name or The Angeles Clinic or Melanoma (Immunotherapy Pd-1). Good luck with the research!!!!. Ed
- - August 27, 2015 at 6:02 pm
  - Quote
  ed williams
  Participant
  With the advantage of hind sight I would have to say "No" to doing Interferon again. That being said, when I made the decision to do it back in 2012 , the only option given was do nothing or Interferon. Most of the experts that I have heard speak about vaccines have said that they have not worked in the past. The only one that has shown positive resulst is t-vec(based on the herpes virus) and you have to have Melanoma that they can inject it into. One Dr. that I follow on Twitter is Dr.Omid Hamid of the Angeles Clinic. He has many presentation on youtube, where he talks about what is new in Melanoma. You can search under his Name or The Angeles Clinic or Melanoma (Immunotherapy Pd-1). Good luck with the research!!!!. Ed
- - August 27, 2015 at 6:02 pm
  - Quote
  ed williams
  Participant
  With the advantage of hind sight I would have to say "No" to doing Interferon again. That being said, when I made the decision to do it back in 2012 , the only option given was do nothing or Interferon. Most of the experts that I have heard speak about vaccines have said that they have not worked in the past. The only one that has shown positive resulst is t-vec(based on the herpes virus) and you have to have Melanoma that they can inject it into. One Dr. that I follow on Twitter is Dr.Omid Hamid of the Angeles Clinic. He has many presentation on youtube, where he talks about what is new in Melanoma. You can search under his Name or The Angeles Clinic or Melanoma (Immunotherapy Pd-1). Good luck with the research!!!!. Ed
- - August 27, 2015 at 6:29 pm
  - Quote
  mjanssentx
  Participant
  SF…what stage is ET right now? Was the melanoma really 9mm or was it .9mm…huge difference?
  
  That staging is incredibly important in terms of your prognosis and treatment options.
  
  As a Stage 3A, would I do it again. Probably yes…but realize that was really based upon there were no really other options for 3A (yes I was offered the vaccine but all 3 of the specialists that I spoke with kind of waived me off of doing that given that lack of proven success at that point in time). Today there are some additional clinical trials that are taking Stage 4 drugs and trying them on Stage 3B & 3C patients. (not sure I have seen a Stage 3A trial that is available for the new PD1 drug but I am sure someone will speak up if it exists)
  
  Go back and read some of the Interferon threads to get an idea for "living the interferon life style".
  
  For me, it came down to the incremental benefits of buying more time in terms of a reoccurance IF I am destined to have one.
  
  Good luck
- - August 27, 2015 at 6:29 pm
  - Quote
  mjanssentx
  Participant
  SF…what stage is ET right now? Was the melanoma really 9mm or was it .9mm…huge difference?
  
  That staging is incredibly important in terms of your prognosis and treatment options.
  
  As a Stage 3A, would I do it again. Probably yes…but realize that was really based upon there were no really other options for 3A (yes I was offered the vaccine but all 3 of the specialists that I spoke with kind of waived me off of doing that given that lack of proven success at that point in time). Today there are some additional clinical trials that are taking Stage 4 drugs and trying them on Stage 3B & 3C patients. (not sure I have seen a Stage 3A trial that is available for the new PD1 drug but I am sure someone will speak up if it exists)
  
  Go back and read some of the Interferon threads to get an idea for "living the interferon life style".
  
  For me, it came down to the incremental benefits of buying more time in terms of a reoccurance IF I am destined to have one.
  
  Good luck
  - August 27, 2015 at 11:15 pm
    
    Quote
    ET-SF
    Participant
    
    Yes, the tumor was 9mm Breslow depth — the size and shape of a small marble — amelanotic and nodular!
  - August 27, 2015 at 11:15 pm
    
    Quote
    ET-SF
    Participant
    
    Yes, the tumor was 9mm Breslow depth — the size and shape of a small marble — amelanotic and nodular!
  - August 27, 2015 at 11:15 pm
    
    Quote
    ET-SF
    Participant
    
    Yes, the tumor was 9mm Breslow depth — the size and shape of a small marble — amelanotic and nodular!
- - August 27, 2015 at 6:29 pm
  - Quote
  mjanssentx
  Participant
  SF…what stage is ET right now? Was the melanoma really 9mm or was it .9mm…huge difference?
  
  That staging is incredibly important in terms of your prognosis and treatment options.
  
  As a Stage 3A, would I do it again. Probably yes…but realize that was really based upon there were no really other options for 3A (yes I was offered the vaccine but all 3 of the specialists that I spoke with kind of waived me off of doing that given that lack of proven success at that point in time). Today there are some additional clinical trials that are taking Stage 4 drugs and trying them on Stage 3B & 3C patients. (not sure I have seen a Stage 3A trial that is available for the new PD1 drug but I am sure someone will speak up if it exists)
  
  Go back and read some of the Interferon threads to get an idea for "living the interferon life style".
  
  For me, it came down to the incremental benefits of buying more time in terms of a reoccurance IF I am destined to have one.
  
  Good luck
- - August 27, 2015 at 10:18 pm
  - Quote
  Julie in SoCal
  Participant
  Hi SF & ET,
  
  With hindsight, I would say no, I wouldn't do it again. I lost about a year and a half of my life and my hearing. If I was diagnosed Stage 3a now, I would go into an IPI and / or PD-1 trial without a problem. But these weren't options in 2008 when I was initially diagnosed.
  
  Hope this helps and you're able to find something that works well for you.
  
  Shalom,
  
  Julie
- - August 27, 2015 at 10:18 pm
  - Quote
  Julie in SoCal
  Participant
  Hi SF & ET,
  
  With hindsight, I would say no, I wouldn't do it again. I lost about a year and a half of my life and my hearing. If I was diagnosed Stage 3a now, I would go into an IPI and / or PD-1 trial without a problem. But these weren't options in 2008 when I was initially diagnosed.
  
  Hope this helps and you're able to find something that works well for you.
  
  Shalom,
  
  Julie
- - August 27, 2015 at 10:18 pm
  - Quote
  Julie in SoCal
  Participant
  Hi SF & ET,
  
  With hindsight, I would say no, I wouldn't do it again. I lost about a year and a half of my life and my hearing. If I was diagnosed Stage 3a now, I would go into an IPI and / or PD-1 trial without a problem. But these weren't options in 2008 when I was initially diagnosed.
  
  Hope this helps and you're able to find something that works well for you.
  
  Shalom,
  
  Julie
- - August 27, 2015 at 11:21 pm
  - Quote
  ET-SF
  Participant
  I somehow neglected to mention that ET is Phase IIb right now:
  
  9mm Breslow
  
  No ulceration
  
  No lymph node involvement
  
  (Surgically resected)
- - August 27, 2015 at 11:21 pm
  - Quote
  ET-SF
  Participant
  I somehow neglected to mention that ET is Phase IIb right now:
  
  9mm Breslow
  
  No ulceration
  
  No lymph node involvement
  
  (Surgically resected)
  - August 27, 2015 at 11:30 pm
    
    Quote
    ET-SF
    Participant
    
    Treatment options at Stage II within 500 mi (of which I'm aware):
    
    — interferon
    
    — a Phase III trial of the POL-103A vaccine (50% shot of being in experimental group)
    
    — a Phase II trial of CDX-1401 + poly-ICLC, with and without CDX-301 (both groups receive treatment)
    
    — an Ipi study that comes up under a Stage IIb search, but for which ET would appear not to qualify.
  - August 27, 2015 at 11:30 pm
    
    Quote
    ET-SF
    Participant
    
    Treatment options at Stage II within 500 mi (of which I'm aware):
    
    — interferon
    
    — a Phase III trial of the POL-103A vaccine (50% shot of being in experimental group)
    
    — a Phase II trial of CDX-1401 + poly-ICLC, with and without CDX-301 (both groups receive treatment)
    
    — an Ipi study that comes up under a Stage IIb search, but for which ET would appear not to qualify.
  - August 28, 2015 at 2:12 pm
    
    Quote
    mjanssentx
    Participant
    
    SF and ET – That 9mm depth is off the charts….not having spread to the Lymph nodes is a very good thing. But the stats for 2B are actually pretty similar for my 3A.
    
    The vast majority of the attention for these new therapies are for 3B and beyond…part of the reason is likely that as a 2B after surgery you are by definition NED…so it is impossible to do a PET scan and see tumor size reduction in a few weeks/months during the treatment process. (you/I don't have a tumor to observe so then it comes down reoccurance). Most of the efforts in the lesser Melanoma stage has been on vaccines but the effect of those still remains to be seen (would love to be pointed to those study results).
    
    BUT we both are in high risk categories for reoocurance. So this comes down how proactive do you want to be? For wife and myself, it came down to the basic choices that you are faced with.
    
    And for us doing something was our choice. If you can find a clinical trial using some of the new drugs for Stage 2 or 3A…I think that would be interersting to explore.
    
    All the best.
  - August 28, 2015 at 2:12 pm
    
    Quote
    mjanssentx
    Participant
    
    SF and ET – That 9mm depth is off the charts….not having spread to the Lymph nodes is a very good thing. But the stats for 2B are actually pretty similar for my 3A.
    
    The vast majority of the attention for these new therapies are for 3B and beyond…part of the reason is likely that as a 2B after surgery you are by definition NED…so it is impossible to do a PET scan and see tumor size reduction in a few weeks/months during the treatment process. (you/I don't have a tumor to observe so then it comes down reoccurance). Most of the efforts in the lesser Melanoma stage has been on vaccines but the effect of those still remains to be seen (would love to be pointed to those study results).
    
    BUT we both are in high risk categories for reoocurance. So this comes down how proactive do you want to be? For wife and myself, it came down to the basic choices that you are faced with.
    
    And for us doing something was our choice. If you can find a clinical trial using some of the new drugs for Stage 2 or 3A…I think that would be interersting to explore.
    
    All the best.
  - August 28, 2015 at 2:12 pm
    
    Quote
    mjanssentx
    Participant
    
    SF and ET – That 9mm depth is off the charts….not having spread to the Lymph nodes is a very good thing. But the stats for 2B are actually pretty similar for my 3A.
    
    The vast majority of the attention for these new therapies are for 3B and beyond…part of the reason is likely that as a 2B after surgery you are by definition NED…so it is impossible to do a PET scan and see tumor size reduction in a few weeks/months during the treatment process. (you/I don't have a tumor to observe so then it comes down reoccurance). Most of the efforts in the lesser Melanoma stage has been on vaccines but the effect of those still remains to be seen (would love to be pointed to those study results).
    
    BUT we both are in high risk categories for reoocurance. So this comes down how proactive do you want to be? For wife and myself, it came down to the basic choices that you are faced with.
    
    And for us doing something was our choice. If you can find a clinical trial using some of the new drugs for Stage 2 or 3A…I think that would be interersting to explore.
    
    All the best.
  - August 27, 2015 at 11:30 pm
    
    Quote
    ET-SF
    Participant
    
    Treatment options at Stage II within 500 mi (of which I'm aware):
    
    — interferon
    
    — a Phase III trial of the POL-103A vaccine (50% shot of being in experimental group)
    
    — a Phase II trial of CDX-1401 + poly-ICLC, with and without CDX-301 (both groups receive treatment)
    
    — an Ipi study that comes up under a Stage IIb search, but for which ET would appear not to qualify.
- - August 27, 2015 at 11:21 pm
  - Quote
  ET-SF
  Participant
  I somehow neglected to mention that ET is Phase IIb right now:
  
  9mm Breslow
  
  No ulceration
  
  No lymph node involvement
  
  (Surgically resected)
- - September 9, 2015 at 2:36 am
  - Quote
  Marissasrn
  Participant
  I had the same decision to make. I chose interferon route in hopes of prolonging recurrence if I have it. I feel like so many new drugs are coming out these last few years and if I have 1-3 years extra time who knows what may be on the market by then. It isn't easy to do the interferon, but so far I'm toughing it out.
- - September 9, 2015 at 2:36 am
  - Quote
  Marissasrn
  Participant
  I had the same decision to make. I chose interferon route in hopes of prolonging recurrence if I have it. I feel like so many new drugs are coming out these last few years and if I have 1-3 years extra time who knows what may be on the market by then. It isn't easy to do the interferon, but so far I'm toughing it out.
- - September 9, 2015 at 2:36 am
  - Quote
  Marissasrn
  Participant
  I had the same decision to make. I chose interferon route in hopes of prolonging recurrence if I have it. I feel like so many new drugs are coming out these last few years and if I have 1-3 years extra time who knows what may be on the market by then. It isn't easy to do the interferon, but so far I'm toughing it out.
- - September 16, 2015 at 9:23 pm
  - Quote
  Never Gonna Stop
  Participant
  Hi SF,
  
  I am currently doing interferon. I'm happy with my decision. I feel like I'm taking advantage of the best offer available to me (stage 3A). I'd love to get a PD-1 inhibitor, but it's not a choice at this stage. I haven't seen any evidence that these vaccines are helpful yet.
  
  I haven't been active on this forum in a while, but I actually just posted a detailed description of my experience with interferon here: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/hope-those-facing-interferon.
  
  It's a very personal decision, but as my oncologist put it, I'm "too young not to try." I jumped in feet first, and have been surprised by how well I have tolerated it. For the sake of not repeating myself all over the place, I leave the rest of the details to my linked post.
  
  On that link, I also link to a published article from the New England Journal of Medicine (a top-tier medical journal) showing that people undergoing high-dose interferon therapy that develop autoimmunity are highly unlikely to relapse with melanoma. I think it can be very effective in 20-25% of patients, and you never know if you're in that group unless you give it a shot!
  
  All the best in the battle ahead,
  
  Justin
- - September 16, 2015 at 9:23 pm
  - Quote
  Never Gonna Stop
  Participant
  Hi SF,
  
  I am currently doing interferon. I'm happy with my decision. I feel like I'm taking advantage of the best offer available to me (stage 3A). I'd love to get a PD-1 inhibitor, but it's not a choice at this stage. I haven't seen any evidence that these vaccines are helpful yet.
  
  I haven't been active on this forum in a while, but I actually just posted a detailed description of my experience with interferon here: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/hope-those-facing-interferon.
  
  It's a very personal decision, but as my oncologist put it, I'm "too young not to try." I jumped in feet first, and have been surprised by how well I have tolerated it. For the sake of not repeating myself all over the place, I leave the rest of the details to my linked post.
  
  On that link, I also link to a published article from the New England Journal of Medicine (a top-tier medical journal) showing that people undergoing high-dose interferon therapy that develop autoimmunity are highly unlikely to relapse with melanoma. I think it can be very effective in 20-25% of patients, and you never know if you're in that group unless you give it a shot!
  
  All the best in the battle ahead,
  
  Justin
  - September 17, 2015 at 2:25 pm
    
    Quote
    ET-SF
    Participant
    
    Thanks, Justin! I agree with your oncologist that you're too young not to try, especially as you have a young family! ET has less on the table because of her age — perhaps 12 years life prolongation if she's in that successful category. That, times the 0.2 probability of success (according to that study) is 2.4 years average life prolongation for a year of autoimmune misery (at least if the drug works). It's certainly something to think about, but the stakes aren't as high as yours. I've printed that paper out, and ET and I will be reading it this morning. I have a private email out to you, BTW. If your filters are like mine, then it might have ended up in your spam folder. 😉
  - September 17, 2015 at 2:25 pm
    
    Quote
    ET-SF
    Participant
    
    Thanks, Justin! I agree with your oncologist that you're too young not to try, especially as you have a young family! ET has less on the table because of her age — perhaps 12 years life prolongation if she's in that successful category. That, times the 0.2 probability of success (according to that study) is 2.4 years average life prolongation for a year of autoimmune misery (at least if the drug works). It's certainly something to think about, but the stakes aren't as high as yours. I've printed that paper out, and ET and I will be reading it this morning. I have a private email out to you, BTW. If your filters are like mine, then it might have ended up in your spam folder. 😉
  - September 17, 2015 at 2:25 pm
    
    Quote
    ET-SF
    Participant
    
    Thanks, Justin! I agree with your oncologist that you're too young not to try, especially as you have a young family! ET has less on the table because of her age — perhaps 12 years life prolongation if she's in that successful category. That, times the 0.2 probability of success (according to that study) is 2.4 years average life prolongation for a year of autoimmune misery (at least if the drug works). It's certainly something to think about, but the stakes aren't as high as yours. I've printed that paper out, and ET and I will be reading it this morning. I have a private email out to you, BTW. If your filters are like mine, then it might have ended up in your spam folder. 😉
- - September 16, 2015 at 9:23 pm
  - Quote
  Never Gonna Stop
  Participant
  Hi SF,
  
  I am currently doing interferon. I'm happy with my decision. I feel like I'm taking advantage of the best offer available to me (stage 3A). I'd love to get a PD-1 inhibitor, but it's not a choice at this stage. I haven't seen any evidence that these vaccines are helpful yet.
  
  I haven't been active on this forum in a while, but I actually just posted a detailed description of my experience with interferon here: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/hope-those-facing-interferon.
  
  It's a very personal decision, but as my oncologist put it, I'm "too young not to try." I jumped in feet first, and have been surprised by how well I have tolerated it. For the sake of not repeating myself all over the place, I leave the rest of the details to my linked post.
  
  On that link, I also link to a published article from the New England Journal of Medicine (a top-tier medical journal) showing that people undergoing high-dose interferon therapy that develop autoimmunity are highly unlikely to relapse with melanoma. I think it can be very effective in 20-25% of patients, and you never know if you're in that group unless you give it a shot!
  
  All the best in the battle ahead,
  
  Justin