Interferon drug
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Interferon drug

› Forums › General Melanoma Community › Interferon drug

  • Post
    • August 19, 2015 at 12:15 am
    Dugandoog1234
    Participant

    29 year old healthy fit male. From Alberta Canada. Diagnosed with stage 3 melanoma on May 15th/2015 location started on an existing mole located bottom middle of back, which then spread to left groin lymph nodes.Surgery was done June 30th/2015 removed cancer from back and all lymph nodes from left groin. PET scan and follow ups showed cancer has all been removed but radiation sessions are being booked to be on the safe side. Recovery had gone well and the full leg compression stocking is a must to limit swelling. My question to all is the cancer centre is offering me the 1 year interferon drug. I have read many posts and web pages and am leaning towards not doing the drug but would love to hear success and positive feed back. I'm very interested in natural paths as well. 

    Thanks everyone

Viewing 5 reply threads
  • Replies
      • August 19, 2015 at 12:58 am
      amelanomajourney
      Participant
      Hey just read your post about interferon.  I'm from a similar situation and was offered the same.
       
      The drug is tough.  I did it for a year, but now that's it's over I'm so grateful I took it, and have nearly forgotten how rough it was.  You'll see a lot of dislike for interferon on the board.  Most people have stage 4 though and aren't sitting at stage 3.  There's not a lot of funding for (under Canada's health care), or evidence that the other drugs like ipi work well in stage 3….yet.
       
      I tried to get into a trial, but missed it so ended up on interferon.  Honestly, since I did it there have been about 6 new drugs developed for melanoma.
       
      10 years ago I would have said live your life quality > quantity.  But we're in this weird transition where there are new drugs being developed, so I'm grateful I took the year out of my life to buy myself time.  
       
      Everyone handles it differently, but if you're young and healthy…
        • August 19, 2015 at 6:01 am
        Dugandoog1234
        Participant

        Thank you so much for the reply. I spent hours reading over your blog…. Wow you should write a book. Such helpful and the real life experiences. Answered many of my thoughts /feelings.

        Cheers

        • August 20, 2015 at 6:27 am
        amelanomajourney
        Participant

        I'm so glad my experience was somewhat helpful to you.  This isn't fair and it makes me so sad that you have to go through the same decisions.  There are many of us out there – be brave and stay strong.  It's hard being a young patient at the clinic.  But you will recover, and this will get better.

        • August 20, 2015 at 6:27 am
        amelanomajourney
        Participant

        I'm so glad my experience was somewhat helpful to you.  This isn't fair and it makes me so sad that you have to go through the same decisions.  There are many of us out there – be brave and stay strong.  It's hard being a young patient at the clinic.  But you will recover, and this will get better.

        • August 20, 2015 at 6:27 am
        amelanomajourney
        Participant

        I'm so glad my experience was somewhat helpful to you.  This isn't fair and it makes me so sad that you have to go through the same decisions.  There are many of us out there – be brave and stay strong.  It's hard being a young patient at the clinic.  But you will recover, and this will get better.

        • August 19, 2015 at 6:01 am
        Dugandoog1234
        Participant

        Thank you so much for the reply. I spent hours reading over your blog…. Wow you should write a book. Such helpful and the real life experiences. Answered many of my thoughts /feelings.

        Cheers

        • August 19, 2015 at 6:01 am
        Dugandoog1234
        Participant

        Thank you so much for the reply. I spent hours reading over your blog…. Wow you should write a book. Such helpful and the real life experiences. Answered many of my thoughts /feelings.

        Cheers

      • August 19, 2015 at 12:58 am
      amelanomajourney
      Participant
      Hey just read your post about interferon.  I'm from a similar situation and was offered the same.
       
      The drug is tough.  I did it for a year, but now that's it's over I'm so grateful I took it, and have nearly forgotten how rough it was.  You'll see a lot of dislike for interferon on the board.  Most people have stage 4 though and aren't sitting at stage 3.  There's not a lot of funding for (under Canada's health care), or evidence that the other drugs like ipi work well in stage 3….yet.
       
      I tried to get into a trial, but missed it so ended up on interferon.  Honestly, since I did it there have been about 6 new drugs developed for melanoma.
       
      10 years ago I would have said live your life quality > quantity.  But we're in this weird transition where there are new drugs being developed, so I'm grateful I took the year out of my life to buy myself time.  
       
      Everyone handles it differently, but if you're young and healthy…
      • August 19, 2015 at 12:58 am
      amelanomajourney
      Participant
      Hey just read your post about interferon.  I'm from a similar situation and was offered the same.
       
      The drug is tough.  I did it for a year, but now that's it's over I'm so grateful I took it, and have nearly forgotten how rough it was.  You'll see a lot of dislike for interferon on the board.  Most people have stage 4 though and aren't sitting at stage 3.  There's not a lot of funding for (under Canada's health care), or evidence that the other drugs like ipi work well in stage 3….yet.
       
      I tried to get into a trial, but missed it so ended up on interferon.  Honestly, since I did it there have been about 6 new drugs developed for melanoma.
       
      10 years ago I would have said live your life quality > quantity.  But we're in this weird transition where there are new drugs being developed, so I'm grateful I took the year out of my life to buy myself time.  
       
      Everyone handles it differently, but if you're young and healthy…
      • August 20, 2015 at 3:34 am
      mjanssentx
      Participant

      Dugan – I am a 51 year old male currently at stage 3A diagnosed with all of the same basic treatments (but no radiation). I am being treated by a doctor that gets mentioned on here fairly often at one of the newest cancer facilities in one of the largest US cities.

      I am now in month 8 of Interferon….and let nobody kid you…it is tough.  If you do enough reading on the existing studies, you will find that interferon won't increase your overall survival rate by more than a few statistical points.  But you will find that is does extend by about 6 months the chances for reoccurrence IF you are among those that are going to have a reoccurrence from about 7 months to 12-13 months.  There is another gentleman that started Interferon the same day at the same facility that I did and has already had a local recurrence so nothing is guaranteed.

      With regards to the actual treatment, the first month is hell for sure.  You will feel like that you have been beat to shit for that entire month and I had to cut my work schedule back to about 35-40 hours per week.  But the good news is that my doctor I take a 2 week break before we started the maintenance phase…and after one week off I was back to 90% of normal…so a pretty fast bounce back.  

      The maintainance phase is all about getting the shot in the evening and then knowing that the next day will be a "blah" day.  My personal experience with Interferon is that it is extremely predictable in terms of how the body reacts.  2 hours after the shot you can start to fill it, 4 hours after the shot fever starts to spike, next morning fever begins to recede, etc.  So you build a rhythm that you can live with.

      I work 60+ hours per week as an executive but do most of that from my home office.  I have scaled back my travel to roughly 2 trips per month lasting 2-4 days each…but again schedule them very carefully to not travel on the day after a shot.  (and occasionally i skip a dosage when traveling so that I can be fully functional during client meetings etc.)

      So why are Stage 3A folks taking Interferon…well there are no other FDA approved treatments for that stage…other than watch and wait.  There are just now some new trials that are becoming available where you can help doctors perfect their craft but all of those have their own challenges.

      I just came back from Cancun, after taking a two week from vacation from Interferon, and I felt almost 95% back to normal after a week off the drug. I get scanned quarterly and I got a good PET scan so my deal is that I get a week vacation to celebrate life somewhere nice.

      To be honest for me it came down to the extra 6 months of delayed reoccurrence probability…and given the speed of some the new stuff coming down the path…that might be the difference in time for new treatments to become available (and doctors have learned enough to administer the drugs).  

      Good luck in your journey.

      • August 20, 2015 at 3:34 am
      mjanssentx
      Participant

      Dugan – I am a 51 year old male currently at stage 3A diagnosed with all of the same basic treatments (but no radiation). I am being treated by a doctor that gets mentioned on here fairly often at one of the newest cancer facilities in one of the largest US cities.

      I am now in month 8 of Interferon….and let nobody kid you…it is tough.  If you do enough reading on the existing studies, you will find that interferon won't increase your overall survival rate by more than a few statistical points.  But you will find that is does extend by about 6 months the chances for reoccurrence IF you are among those that are going to have a reoccurrence from about 7 months to 12-13 months.  There is another gentleman that started Interferon the same day at the same facility that I did and has already had a local recurrence so nothing is guaranteed.

      With regards to the actual treatment, the first month is hell for sure.  You will feel like that you have been beat to shit for that entire month and I had to cut my work schedule back to about 35-40 hours per week.  But the good news is that my doctor I take a 2 week break before we started the maintenance phase…and after one week off I was back to 90% of normal…so a pretty fast bounce back.  

      The maintainance phase is all about getting the shot in the evening and then knowing that the next day will be a "blah" day.  My personal experience with Interferon is that it is extremely predictable in terms of how the body reacts.  2 hours after the shot you can start to fill it, 4 hours after the shot fever starts to spike, next morning fever begins to recede, etc.  So you build a rhythm that you can live with.

      I work 60+ hours per week as an executive but do most of that from my home office.  I have scaled back my travel to roughly 2 trips per month lasting 2-4 days each…but again schedule them very carefully to not travel on the day after a shot.  (and occasionally i skip a dosage when traveling so that I can be fully functional during client meetings etc.)

      So why are Stage 3A folks taking Interferon…well there are no other FDA approved treatments for that stage…other than watch and wait.  There are just now some new trials that are becoming available where you can help doctors perfect their craft but all of those have their own challenges.

      I just came back from Cancun, after taking a two week from vacation from Interferon, and I felt almost 95% back to normal after a week off the drug. I get scanned quarterly and I got a good PET scan so my deal is that I get a week vacation to celebrate life somewhere nice.

      To be honest for me it came down to the extra 6 months of delayed reoccurrence probability…and given the speed of some the new stuff coming down the path…that might be the difference in time for new treatments to become available (and doctors have learned enough to administer the drugs).  

      Good luck in your journey.

        • August 21, 2015 at 4:34 am
        Dugandoog1234
        Participant

        Thank you! 

        what was the reasoning for no radiation? I am scheduled in for next week but it's only a recommendation. 

        • August 21, 2015 at 4:34 am
        Dugandoog1234
        Participant

        Thank you! 

        what was the reasoning for no radiation? I am scheduled in for next week but it's only a recommendation. 

        • August 21, 2015 at 4:34 am
        Dugandoog1234
        Participant

        Thank you! 

        what was the reasoning for no radiation? I am scheduled in for next week but it's only a recommendation. 

        • August 21, 2015 at 12:41 pm
        ed williams
        Participant

        First I am no expert on the field but from what I have read on radiation over the last couple of years with Melanoma is that it is used on large tumors to try and slow tumor growth giving time for other treatments( targeted or Immunotherapy ) to work. Look up Artie's post, he has had lots of experience with radiation and could probably help you with any questions. When they use radiation when there is no measureable disease how can you tell if it has worked! Another person on the forum that could be helpfull to you is Bubbles( Celeste) she has a blog that covers most topics) . I have had stereotatic radiation to the brain with the cyberknife at the Ottawa General hospital when I had 3 small mets about 3 to 4 mm in size. I had the treatment in Oct of 2013 and so far so good.  I would get a second opinion from a Melanoma specailist. Some clinical trials have exclusions so you don't want to do something at stage 3 that could harm future options in case the Melanoma advances to stage 4. Wishing you the best!!! Ed

        • August 21, 2015 at 12:41 pm
        ed williams
        Participant

        First I am no expert on the field but from what I have read on radiation over the last couple of years with Melanoma is that it is used on large tumors to try and slow tumor growth giving time for other treatments( targeted or Immunotherapy ) to work. Look up Artie's post, he has had lots of experience with radiation and could probably help you with any questions. When they use radiation when there is no measureable disease how can you tell if it has worked! Another person on the forum that could be helpfull to you is Bubbles( Celeste) she has a blog that covers most topics) . I have had stereotatic radiation to the brain with the cyberknife at the Ottawa General hospital when I had 3 small mets about 3 to 4 mm in size. I had the treatment in Oct of 2013 and so far so good.  I would get a second opinion from a Melanoma specailist. Some clinical trials have exclusions so you don't want to do something at stage 3 that could harm future options in case the Melanoma advances to stage 4. Wishing you the best!!! Ed

        • August 21, 2015 at 12:41 pm
        ed williams
        Participant

        First I am no expert on the field but from what I have read on radiation over the last couple of years with Melanoma is that it is used on large tumors to try and slow tumor growth giving time for other treatments( targeted or Immunotherapy ) to work. Look up Artie's post, he has had lots of experience with radiation and could probably help you with any questions. When they use radiation when there is no measureable disease how can you tell if it has worked! Another person on the forum that could be helpfull to you is Bubbles( Celeste) she has a blog that covers most topics) . I have had stereotatic radiation to the brain with the cyberknife at the Ottawa General hospital when I had 3 small mets about 3 to 4 mm in size. I had the treatment in Oct of 2013 and so far so good.  I would get a second opinion from a Melanoma specailist. Some clinical trials have exclusions so you don't want to do something at stage 3 that could harm future options in case the Melanoma advances to stage 4. Wishing you the best!!! Ed

        • August 21, 2015 at 1:56 pm
        mjanssentx
        Participant

        None of the three melanoma specialists even mentioned radiation.  For stage 3A patients, after your initial surgeries for your wide area excision and lymph nodes…you are almost by definition NED.  

        The problem is the 30% likelyhood that the microscopic cancer cells have spread but they have no tests to understand where they have spread to.

        I prefer to think about the 70% chance (for 3A) that the surgeries got everything.

        • August 23, 2015 at 12:24 pm
        Squash
        Participant

        I have a similar question.

        I was recommended chemo and radiation for stage 3c because the surgeon wasnt sure he could get it all but is this really the best option?

        Wouldnt i be better off going on a trial for keytruda or do Ipi?

         

        • August 23, 2015 at 1:20 pm
        mjanssentx
        Participant

        That makes sense…Stage 3A and Stage 3C are two different ball games.

        I think there are now a good number of trials for 3C (and maybe 3B) for adjunctive combo treatments that were previously reserved for Stage 4.  I would seriously check those out.

        But for Stage 3A…the trials that I was offered were a Phase 1 vaccine and another trial came out shortly after what would been my qualification period post surgery.

        If I was newly diagnosed Stage 3B or 3C…get aggressive and find out more.

        All the best.

        • August 24, 2015 at 4:29 am
        Dugandoog1234
        Participant

        I decided I will follow thru with the 5 treatments of radiation on my back and left groin area. But is there anyone out there who has been stage 3b that decided not to take the interferon route and has had a healthy life? Also understanding all cases are different. I don't like believing that the 5 year life expectancy is 60% for stage 3b.

        • August 24, 2015 at 3:02 pm
        ed williams
        Participant

        Just curious where you are getting the 60% life expectancy data?  If it is from your doctor, then I would be looking for a new one that is a Melanoma specialist. If it is from the internet make sure the source is reliable and using current data. I have been living with stage 4 for just over 2 years now. The data at the time said I had 5 to 6 months to live due to the brain mets. With all the new treatments and advances in Immunotherapy and targeted therapy the old stats are just that "Old and out dated" . Most of the newer trials for Immunotherapy have no solid data for how long people will live because we are still alive and due to that fact they can only make perdictions. Wishing you the best!!! Ed

        • August 24, 2015 at 3:02 pm
        ed williams
        Participant

        Just curious where you are getting the 60% life expectancy data?  If it is from your doctor, then I would be looking for a new one that is a Melanoma specialist. If it is from the internet make sure the source is reliable and using current data. I have been living with stage 4 for just over 2 years now. The data at the time said I had 5 to 6 months to live due to the brain mets. With all the new treatments and advances in Immunotherapy and targeted therapy the old stats are just that "Old and out dated" . Most of the newer trials for Immunotherapy have no solid data for how long people will live because we are still alive and due to that fact they can only make perdictions. Wishing you the best!!! Ed

        • August 24, 2015 at 3:02 pm
        ed williams
        Participant

        Just curious where you are getting the 60% life expectancy data?  If it is from your doctor, then I would be looking for a new one that is a Melanoma specialist. If it is from the internet make sure the source is reliable and using current data. I have been living with stage 4 for just over 2 years now. The data at the time said I had 5 to 6 months to live due to the brain mets. With all the new treatments and advances in Immunotherapy and targeted therapy the old stats are just that "Old and out dated" . Most of the newer trials for Immunotherapy have no solid data for how long people will live because we are still alive and due to that fact they can only make perdictions. Wishing you the best!!! Ed

        • August 24, 2015 at 4:29 am
        Dugandoog1234
        Participant

        I decided I will follow thru with the 5 treatments of radiation on my back and left groin area. But is there anyone out there who has been stage 3b that decided not to take the interferon route and has had a healthy life? Also understanding all cases are different. I don't like believing that the 5 year life expectancy is 60% for stage 3b.

        • August 24, 2015 at 4:29 am
        Dugandoog1234
        Participant

        I decided I will follow thru with the 5 treatments of radiation on my back and left groin area. But is there anyone out there who has been stage 3b that decided not to take the interferon route and has had a healthy life? Also understanding all cases are different. I don't like believing that the 5 year life expectancy is 60% for stage 3b.

        • August 23, 2015 at 1:20 pm
        mjanssentx
        Participant

        That makes sense…Stage 3A and Stage 3C are two different ball games.

        I think there are now a good number of trials for 3C (and maybe 3B) for adjunctive combo treatments that were previously reserved for Stage 4.  I would seriously check those out.

        But for Stage 3A…the trials that I was offered were a Phase 1 vaccine and another trial came out shortly after what would been my qualification period post surgery.

        If I was newly diagnosed Stage 3B or 3C…get aggressive and find out more.

        All the best.

        • August 23, 2015 at 1:20 pm
        mjanssentx
        Participant

        That makes sense…Stage 3A and Stage 3C are two different ball games.

        I think there are now a good number of trials for 3C (and maybe 3B) for adjunctive combo treatments that were previously reserved for Stage 4.  I would seriously check those out.

        But for Stage 3A…the trials that I was offered were a Phase 1 vaccine and another trial came out shortly after what would been my qualification period post surgery.

        If I was newly diagnosed Stage 3B or 3C…get aggressive and find out more.

        All the best.

        • August 23, 2015 at 12:24 pm
        Squash
        Participant

        I have a similar question.

        I was recommended chemo and radiation for stage 3c because the surgeon wasnt sure he could get it all but is this really the best option?

        Wouldnt i be better off going on a trial for keytruda or do Ipi?

         

        • August 23, 2015 at 12:24 pm
        Squash
        Participant

        I have a similar question.

        I was recommended chemo and radiation for stage 3c because the surgeon wasnt sure he could get it all but is this really the best option?

        Wouldnt i be better off going on a trial for keytruda or do Ipi?

         

        • August 24, 2015 at 2:04 pm
        Thandster
        Participant

        When I was 3A, my oncologist told me it was a 60% chance that it would come back. I wish it was 30%. 

        • August 24, 2015 at 2:04 pm
        Thandster
        Participant

        When I was 3A, my oncologist told me it was a 60% chance that it would come back. I wish it was 30%. 

        • August 24, 2015 at 2:04 pm
        Thandster
        Participant

        When I was 3A, my oncologist told me it was a 60% chance that it would come back. I wish it was 30%. 

        • August 21, 2015 at 1:56 pm
        mjanssentx
        Participant

        None of the three melanoma specialists even mentioned radiation.  For stage 3A patients, after your initial surgeries for your wide area excision and lymph nodes…you are almost by definition NED.  

        The problem is the 30% likelyhood that the microscopic cancer cells have spread but they have no tests to understand where they have spread to.

        I prefer to think about the 70% chance (for 3A) that the surgeries got everything.

        • August 21, 2015 at 1:56 pm
        mjanssentx
        Participant

        None of the three melanoma specialists even mentioned radiation.  For stage 3A patients, after your initial surgeries for your wide area excision and lymph nodes…you are almost by definition NED.  

        The problem is the 30% likelyhood that the microscopic cancer cells have spread but they have no tests to understand where they have spread to.

        I prefer to think about the 70% chance (for 3A) that the surgeries got everything.

      • August 20, 2015 at 3:34 am
      mjanssentx
      Participant

      Dugan – I am a 51 year old male currently at stage 3A diagnosed with all of the same basic treatments (but no radiation). I am being treated by a doctor that gets mentioned on here fairly often at one of the newest cancer facilities in one of the largest US cities.

      I am now in month 8 of Interferon….and let nobody kid you…it is tough.  If you do enough reading on the existing studies, you will find that interferon won't increase your overall survival rate by more than a few statistical points.  But you will find that is does extend by about 6 months the chances for reoccurrence IF you are among those that are going to have a reoccurrence from about 7 months to 12-13 months.  There is another gentleman that started Interferon the same day at the same facility that I did and has already had a local recurrence so nothing is guaranteed.

      With regards to the actual treatment, the first month is hell for sure.  You will feel like that you have been beat to shit for that entire month and I had to cut my work schedule back to about 35-40 hours per week.  But the good news is that my doctor I take a 2 week break before we started the maintenance phase…and after one week off I was back to 90% of normal…so a pretty fast bounce back.  

      The maintainance phase is all about getting the shot in the evening and then knowing that the next day will be a "blah" day.  My personal experience with Interferon is that it is extremely predictable in terms of how the body reacts.  2 hours after the shot you can start to fill it, 4 hours after the shot fever starts to spike, next morning fever begins to recede, etc.  So you build a rhythm that you can live with.

      I work 60+ hours per week as an executive but do most of that from my home office.  I have scaled back my travel to roughly 2 trips per month lasting 2-4 days each…but again schedule them very carefully to not travel on the day after a shot.  (and occasionally i skip a dosage when traveling so that I can be fully functional during client meetings etc.)

      So why are Stage 3A folks taking Interferon…well there are no other FDA approved treatments for that stage…other than watch and wait.  There are just now some new trials that are becoming available where you can help doctors perfect their craft but all of those have their own challenges.

      I just came back from Cancun, after taking a two week from vacation from Interferon, and I felt almost 95% back to normal after a week off the drug. I get scanned quarterly and I got a good PET scan so my deal is that I get a week vacation to celebrate life somewhere nice.

      To be honest for me it came down to the extra 6 months of delayed reoccurrence probability…and given the speed of some the new stuff coming down the path…that might be the difference in time for new treatments to become available (and doctors have learned enough to administer the drugs).  

      Good luck in your journey.

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