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Patient experiences with Interferon Alpha

Forums General Melanoma Community Patient experiences with Interferon Alpha

  • Post
    michaelinsocal
    Participant

      Hello everyone. Forgive me if this topic has been asked before. I am scheduled to undergo Interferon Alpha treatments next month.

      it will be a 12 month program, 4 weeks of beonh given the drug through IV and 11 months of self injected shots. 

      Ive done quite a bit of research and understand the side effects from the most common to the severe. I'd like to get feedback as well as any advice on how to deal with it initially and any helpful tips to survive the entire 12 month process.

      i am planning on returning back to work, however just part time and claim partial disability until I can work myself back up to a 40 work week. I work retail grocery and being on your feet for 9 hours a day will be a challenge.

       

      thanks in advance. Any feedback is appreciated.

      Michael

       

    Viewing 38 reply threads
    • Replies
        joy_
        Participant

          Hi Michael,

          My husband did one month of high dose interferon.  He did not continue with the 11 month self injections because he had the worse side effect profile that his docs had seen so they decided to stop there.  I can tell you that drinking LOTS of water is recommended, and one thing we found helpful for severe chills was keeping a blanket in the dryer and firing it up when that happened.  Most give Tylenol and benedryl with the infusion or pretreat, but if your docs do not, you may want to consider doing that before you go in for it and keep it on hand for fevers after.

          Hopefully you will tolerate it well.  Best wishes!

           

          joy_
          Participant

            Hi Michael,

            My husband did one month of high dose interferon.  He did not continue with the 11 month self injections because he had the worse side effect profile that his docs had seen so they decided to stop there.  I can tell you that drinking LOTS of water is recommended, and one thing we found helpful for severe chills was keeping a blanket in the dryer and firing it up when that happened.  Most give Tylenol and benedryl with the infusion or pretreat, but if your docs do not, you may want to consider doing that before you go in for it and keep it on hand for fevers after.

            Hopefully you will tolerate it well.  Best wishes!

             

            joy_
            Participant

              Hi Michael,

              My husband did one month of high dose interferon.  He did not continue with the 11 month self injections because he had the worse side effect profile that his docs had seen so they decided to stop there.  I can tell you that drinking LOTS of water is recommended, and one thing we found helpful for severe chills was keeping a blanket in the dryer and firing it up when that happened.  Most give Tylenol and benedryl with the infusion or pretreat, but if your docs do not, you may want to consider doing that before you go in for it and keep it on hand for fevers after.

              Hopefully you will tolerate it well.  Best wishes!

               

              Fen
              Participant

                It's a controversial treatment with many melanoma centers no longer supporting it.   Is your oncologist suggesting it?  

                Fen
                Participant

                  It's a controversial treatment with many melanoma centers no longer supporting it.   Is your oncologist suggesting it?  

                  Fen
                  Participant

                    It's a controversial treatment with many melanoma centers no longer supporting it.   Is your oncologist suggesting it?  

                      michaelinsocal
                      Participant

                        First off, thank you all for your responses.

                        Yes, my oncologist is suggesting it. She's looked into clinical trials for me but a majority are for stage 4, I am stage 3a. She also said a recent study looked at the the benefits of taking interferon for the first 4 weeks VS the full 12 month duration and according to the study results the only people that benefitted were the ones that went the entire distance. My oncologist said that 12 months of interferon generally reduces the chance of reoccurrence further by 8%.

                        So I'm stuck between the Dr's recommendation and what I've learned on my own as well as the advice here.

                        I'd like to hear more stories about the drug, both pros and cons. I have until May 5th before I start my treatment.

                         

                        michael

                        Janner
                        Participant

                          Did your onc say "generally reduces the chance of recurrence by 8%" FOR ONE YEAR?  It DELAYS your risk of recurrence by one year for those who are on it…..    For your stage, unless you get into some type of clinical trial, it's all a doctor can offer you.  Does that mean you should do it?  I'd do your own research on the benefits/risks of interferon, the 1 vs 12 months, the risk that interferon encourages a recurrence, and the overall survival numbers.  The studies exist, the data exists.  Read the disease free survival numbers, read the overall survival numbers.  Then if you feel it is the right choice for you, you know all of the pertinent data going it.  This is a personal choice!

                          Janner
                          Participant

                            Did your onc say "generally reduces the chance of recurrence by 8%" FOR ONE YEAR?  It DELAYS your risk of recurrence by one year for those who are on it…..    For your stage, unless you get into some type of clinical trial, it's all a doctor can offer you.  Does that mean you should do it?  I'd do your own research on the benefits/risks of interferon, the 1 vs 12 months, the risk that interferon encourages a recurrence, and the overall survival numbers.  The studies exist, the data exists.  Read the disease free survival numbers, read the overall survival numbers.  Then if you feel it is the right choice for you, you know all of the pertinent data going it.  This is a personal choice!

                            Janner
                            Participant

                              Did your onc say "generally reduces the chance of recurrence by 8%" FOR ONE YEAR?  It DELAYS your risk of recurrence by one year for those who are on it…..    For your stage, unless you get into some type of clinical trial, it's all a doctor can offer you.  Does that mean you should do it?  I'd do your own research on the benefits/risks of interferon, the 1 vs 12 months, the risk that interferon encourages a recurrence, and the overall survival numbers.  The studies exist, the data exists.  Read the disease free survival numbers, read the overall survival numbers.  Then if you feel it is the right choice for you, you know all of the pertinent data going it.  This is a personal choice!

                              michaelinsocal
                              Participant

                                First off, thank you all for your responses.

                                Yes, my oncologist is suggesting it. She's looked into clinical trials for me but a majority are for stage 4, I am stage 3a. She also said a recent study looked at the the benefits of taking interferon for the first 4 weeks VS the full 12 month duration and according to the study results the only people that benefitted were the ones that went the entire distance. My oncologist said that 12 months of interferon generally reduces the chance of reoccurrence further by 8%.

                                So I'm stuck between the Dr's recommendation and what I've learned on my own as well as the advice here.

                                I'd like to hear more stories about the drug, both pros and cons. I have until May 5th before I start my treatment.

                                 

                                michael

                                michaelinsocal
                                Participant

                                  First off, thank you all for your responses.

                                  Yes, my oncologist is suggesting it. She's looked into clinical trials for me but a majority are for stage 4, I am stage 3a. She also said a recent study looked at the the benefits of taking interferon for the first 4 weeks VS the full 12 month duration and according to the study results the only people that benefitted were the ones that went the entire distance. My oncologist said that 12 months of interferon generally reduces the chance of reoccurrence further by 8%.

                                  So I'm stuck between the Dr's recommendation and what I've learned on my own as well as the advice here.

                                  I'd like to hear more stories about the drug, both pros and cons. I have until May 5th before I start my treatment.

                                   

                                  michael

                                Cooper
                                Participant

                                  Your doctor is not up to date on melanoma treatments.  And the stats are wrong for it. 

                                  Here is a great article by Paul Chapman at Sloan Kettering

                                   

                                  http://theoncologist.alphamedpress.org/content/10/9/739.full

                                  Cooper
                                  Participant

                                    Your doctor is not up to date on melanoma treatments.  And the stats are wrong for it. 

                                    Here is a great article by Paul Chapman at Sloan Kettering

                                     

                                    http://theoncologist.alphamedpress.org/content/10/9/739.full

                                    Cooper
                                    Participant

                                      Your doctor is not up to date on melanoma treatments.  And the stats are wrong for it. 

                                      Here is a great article by Paul Chapman at Sloan Kettering

                                       

                                      http://theoncologist.alphamedpress.org/content/10/9/739.full

                                      Becky
                                      Participant

                                        Michael

                                        I know that interferon is controversial but I think it is a decision only you can make, and there are lots of people who have done the year with no regrets.

                                        but to answer your question, my son did interferon for a year in 2009-10. He was in college at the time. He did take one semester off because the first month was everyday. After that he went back to school while doing the 3x a week injections. 

                                        For him the first month was the hardest,,after that it was mostly fatigue but he timed the injections to have the least affect on his schedule. He was able to work part time and take classes full time. 

                                        Good luck with whatever you decide

                                        Becky

                                        Becky
                                        Participant

                                          Michael

                                          I know that interferon is controversial but I think it is a decision only you can make, and there are lots of people who have done the year with no regrets.

                                          but to answer your question, my son did interferon for a year in 2009-10. He was in college at the time. He did take one semester off because the first month was everyday. After that he went back to school while doing the 3x a week injections. 

                                          For him the first month was the hardest,,after that it was mostly fatigue but he timed the injections to have the least affect on his schedule. He was able to work part time and take classes full time. 

                                          Good luck with whatever you decide

                                          Becky

                                          Becky
                                          Participant

                                            Michael

                                            I know that interferon is controversial but I think it is a decision only you can make, and there are lots of people who have done the year with no regrets.

                                            but to answer your question, my son did interferon for a year in 2009-10. He was in college at the time. He did take one semester off because the first month was everyday. After that he went back to school while doing the 3x a week injections. 

                                            For him the first month was the hardest,,after that it was mostly fatigue but he timed the injections to have the least affect on his schedule. He was able to work part time and take classes full time. 

                                            Good luck with whatever you decide

                                            Becky

                                            kpcollins31
                                            Participant

                                              Not sure why you would consider Interferon… the risk/reward is not there. No survival benefit whatsoever. High toxicities so you would likely feel terrible for a year. Only potential benefit is a delay in recurrence… for me, if it would not make me live any longer and make me sick for a year I would pass. 

                                              Kevin

                                               

                                              kpcollins31
                                              Participant

                                                Not sure why you would consider Interferon… the risk/reward is not there. No survival benefit whatsoever. High toxicities so you would likely feel terrible for a year. Only potential benefit is a delay in recurrence… for me, if it would not make me live any longer and make me sick for a year I would pass. 

                                                Kevin

                                                 

                                                kpcollins31
                                                Participant

                                                  Not sure why you would consider Interferon… the risk/reward is not there. No survival benefit whatsoever. High toxicities so you would likely feel terrible for a year. Only potential benefit is a delay in recurrence… for me, if it would not make me live any longer and make me sick for a year I would pass. 

                                                  Kevin

                                                   

                                                  POW
                                                  Participant

                                                    Before you make a final decision about interferon, I strongly suggest that you get a second opinion from a melanoma specialty center, especially one that conducts a lot of clinical trials. You are fortunate to live in Southern California because there are a number of such centers in the LA area: Dr. Omid Hamid at The Angeles Clinic and Dr. Steven O'Day at the Hollywood Clinic are highly regarded as are several melanoma specialists at UCLA, the John Wayne Cancer Center and other places. 

                                                    Interferon is FDA approved for Stage III melanoma; Yervoy (ipi) is also FDA approved for Stage III "unresectable" (i.e., you have tumors that can not be surgically removed). However, as new treatments are being developed, more and more oncologists are recommending that their Stage III patients consider a clinical trial that admits Stage III patients before making a final decision about your treatment options. 

                                                    POW
                                                    Participant

                                                      Before you make a final decision about interferon, I strongly suggest that you get a second opinion from a melanoma specialty center, especially one that conducts a lot of clinical trials. You are fortunate to live in Southern California because there are a number of such centers in the LA area: Dr. Omid Hamid at The Angeles Clinic and Dr. Steven O'Day at the Hollywood Clinic are highly regarded as are several melanoma specialists at UCLA, the John Wayne Cancer Center and other places. 

                                                      Interferon is FDA approved for Stage III melanoma; Yervoy (ipi) is also FDA approved for Stage III "unresectable" (i.e., you have tumors that can not be surgically removed). However, as new treatments are being developed, more and more oncologists are recommending that their Stage III patients consider a clinical trial that admits Stage III patients before making a final decision about your treatment options. 

                                                      POW
                                                      Participant

                                                        Before you make a final decision about interferon, I strongly suggest that you get a second opinion from a melanoma specialty center, especially one that conducts a lot of clinical trials. You are fortunate to live in Southern California because there are a number of such centers in the LA area: Dr. Omid Hamid at The Angeles Clinic and Dr. Steven O'Day at the Hollywood Clinic are highly regarded as are several melanoma specialists at UCLA, the John Wayne Cancer Center and other places. 

                                                        Interferon is FDA approved for Stage III melanoma; Yervoy (ipi) is also FDA approved for Stage III "unresectable" (i.e., you have tumors that can not be surgically removed). However, as new treatments are being developed, more and more oncologists are recommending that their Stage III patients consider a clinical trial that admits Stage III patients before making a final decision about your treatment options. 

                                                        [email protected]
                                                        Participant

                                                          I was dx in May, 2000 with stage 3 having micro mets in one sentinel node. I choose a full node dissection and went with Interferon as my treatment. I was 34 at the time with 2 small children and refused to do nothing. My other options at the time were double blinded studies and I wouldn't take the chance I might not get the drug.

                                                          I did the entire years treatment starting with the high dose for 1 month and 3 shots a week for the next 11 months. At the end of this May, it will be 14 YEARS since my dx and I have not had a reoccurrence. People will argue was it the Interferon? Was it the node dissection? Was I just one of the lucky ones? I don't know and don't really care. Just happy to be. I was an MRF board member for over 8 years. There were 2 others on the board that went through Interferon at the same time as me (1 for just the month of high dose and the other for the full year). As far as I know, they both continue to be NED.

                                                          I certainly did have side effects. I was nauseous for almost the entire year and lost close to 30 lbs. I seemed to have a headache the whole time too. But it was never debilitating. I kept up my normal routine with my 5 and 7 year olds. I continued my job as an accountant 20-30 hours a week. Sure some days were worst than others but it was doable. 

                                                          This has always been a struggle for me when I see people bash Interferon. By all means if you tried it and it kicked your butt, chime in. But if you have just "heard" how bad it is, don't try to scare people from the treatment. If there is a treatment that would be a better fit for someone, I would recommend they try it instead of Interferon. However, before I would advocate that someone do NOTHING just because Interferon is so "horrible", try it out. There are plenty of people like me who tolerate it just fine. I like to suggest to those who just want to "watch and wait" try Interferon for the one month of high dose. Some studies show that is really all that is needed. If you feel crappy, it's just one month!

                                                          Just thought I would chime in from someone who actually experienced it. I do personally know of people that tried Interferon and had horrible side effects. And some whom it didn't help. As someone else said, the treatment decision is a personal one. Base your decision on the facts you can gather and what will work best for your life style and your risk assessment. 

                                                          My last (and I think BEST) piece of advice is once you have chosen your treatment, stand behind it 110% and never look back! You can never win the "would of, could of should of" game. Please feel free to email if I can be of any assistance  [email protected].

                                                          Best of luck to you! Take care!

                                                          Cara  

                                                           

                                                          [email protected]
                                                          Participant

                                                            I was dx in May, 2000 with stage 3 having micro mets in one sentinel node. I choose a full node dissection and went with Interferon as my treatment. I was 34 at the time with 2 small children and refused to do nothing. My other options at the time were double blinded studies and I wouldn't take the chance I might not get the drug.

                                                            I did the entire years treatment starting with the high dose for 1 month and 3 shots a week for the next 11 months. At the end of this May, it will be 14 YEARS since my dx and I have not had a reoccurrence. People will argue was it the Interferon? Was it the node dissection? Was I just one of the lucky ones? I don't know and don't really care. Just happy to be. I was an MRF board member for over 8 years. There were 2 others on the board that went through Interferon at the same time as me (1 for just the month of high dose and the other for the full year). As far as I know, they both continue to be NED.

                                                            I certainly did have side effects. I was nauseous for almost the entire year and lost close to 30 lbs. I seemed to have a headache the whole time too. But it was never debilitating. I kept up my normal routine with my 5 and 7 year olds. I continued my job as an accountant 20-30 hours a week. Sure some days were worst than others but it was doable. 

                                                            This has always been a struggle for me when I see people bash Interferon. By all means if you tried it and it kicked your butt, chime in. But if you have just "heard" how bad it is, don't try to scare people from the treatment. If there is a treatment that would be a better fit for someone, I would recommend they try it instead of Interferon. However, before I would advocate that someone do NOTHING just because Interferon is so "horrible", try it out. There are plenty of people like me who tolerate it just fine. I like to suggest to those who just want to "watch and wait" try Interferon for the one month of high dose. Some studies show that is really all that is needed. If you feel crappy, it's just one month!

                                                            Just thought I would chime in from someone who actually experienced it. I do personally know of people that tried Interferon and had horrible side effects. And some whom it didn't help. As someone else said, the treatment decision is a personal one. Base your decision on the facts you can gather and what will work best for your life style and your risk assessment. 

                                                            My last (and I think BEST) piece of advice is once you have chosen your treatment, stand behind it 110% and never look back! You can never win the "would of, could of should of" game. Please feel free to email if I can be of any assistance  [email protected].

                                                            Best of luck to you! Take care!

                                                            Cara  

                                                             

                                                            [email protected]
                                                            Participant

                                                              I was dx in May, 2000 with stage 3 having micro mets in one sentinel node. I choose a full node dissection and went with Interferon as my treatment. I was 34 at the time with 2 small children and refused to do nothing. My other options at the time were double blinded studies and I wouldn't take the chance I might not get the drug.

                                                              I did the entire years treatment starting with the high dose for 1 month and 3 shots a week for the next 11 months. At the end of this May, it will be 14 YEARS since my dx and I have not had a reoccurrence. People will argue was it the Interferon? Was it the node dissection? Was I just one of the lucky ones? I don't know and don't really care. Just happy to be. I was an MRF board member for over 8 years. There were 2 others on the board that went through Interferon at the same time as me (1 for just the month of high dose and the other for the full year). As far as I know, they both continue to be NED.

                                                              I certainly did have side effects. I was nauseous for almost the entire year and lost close to 30 lbs. I seemed to have a headache the whole time too. But it was never debilitating. I kept up my normal routine with my 5 and 7 year olds. I continued my job as an accountant 20-30 hours a week. Sure some days were worst than others but it was doable. 

                                                              This has always been a struggle for me when I see people bash Interferon. By all means if you tried it and it kicked your butt, chime in. But if you have just "heard" how bad it is, don't try to scare people from the treatment. If there is a treatment that would be a better fit for someone, I would recommend they try it instead of Interferon. However, before I would advocate that someone do NOTHING just because Interferon is so "horrible", try it out. There are plenty of people like me who tolerate it just fine. I like to suggest to those who just want to "watch and wait" try Interferon for the one month of high dose. Some studies show that is really all that is needed. If you feel crappy, it's just one month!

                                                              Just thought I would chime in from someone who actually experienced it. I do personally know of people that tried Interferon and had horrible side effects. And some whom it didn't help. As someone else said, the treatment decision is a personal one. Base your decision on the facts you can gather and what will work best for your life style and your risk assessment. 

                                                              My last (and I think BEST) piece of advice is once you have chosen your treatment, stand behind it 110% and never look back! You can never win the "would of, could of should of" game. Please feel free to email if I can be of any assistance  [email protected].

                                                              Best of luck to you! Take care!

                                                              Cara  

                                                               

                                                              ckoch
                                                              Participant

                                                                Hi Michael,

                                                                 

                                                                I was diagnosed with a 3C lesion on my cheek in 2010 and completed the 12 month Interferon protocal (same as planned for you, 4 weeks of IV then self injections).  My experience was exactly as it was described to me.  I could feel like I had a bad flu for a year…and that was exactly how I felt.  I was extremely fatigued, couldn't sit in an un-padded chair for more than 10 minutes without back and body aches starting.  I experienced a loss of appetite and subsequent weight, body aches, headaches, dry mouth and my hair became very thin.  It completey delbilitated me for a year.  I was not able to work or perform most normal activities.  I recall craving my favoite Carrott Cake so one day decided to make it.  What would have normally took me 30-45 minutes to throw together took me 5 hours!  I would do a little then lay down then repeat! 

                                                                I discovered this site while going thru the Interferon and at that time there were quite a few people posting who were doing the same thing.  I recall that many of them had very minor side effects and were able to carry on their normal life activities.  Unfortunately, that did not happen for me but many had no issues with it and were able to carry on their normal life activities

                                                                Unfortunately, Interferon did not do the trick for me.  In January of this year my annual PET/CT showed t with two MET lesions on my left lung and I am not Stage 4B.  I asked my oncologist what the Interferon did for me and was told that it simply prolonged the MET.  I am currently on IPI with plans to PD-1 if there is no response to the IPI.

                                                                Best of luck to you

                                                                Cindy

                                                                 

                                                                ckoch
                                                                Participant

                                                                  Hi Michael,

                                                                   

                                                                  I was diagnosed with a 3C lesion on my cheek in 2010 and completed the 12 month Interferon protocal (same as planned for you, 4 weeks of IV then self injections).  My experience was exactly as it was described to me.  I could feel like I had a bad flu for a year…and that was exactly how I felt.  I was extremely fatigued, couldn't sit in an un-padded chair for more than 10 minutes without back and body aches starting.  I experienced a loss of appetite and subsequent weight, body aches, headaches, dry mouth and my hair became very thin.  It completey delbilitated me for a year.  I was not able to work or perform most normal activities.  I recall craving my favoite Carrott Cake so one day decided to make it.  What would have normally took me 30-45 minutes to throw together took me 5 hours!  I would do a little then lay down then repeat! 

                                                                  I discovered this site while going thru the Interferon and at that time there were quite a few people posting who were doing the same thing.  I recall that many of them had very minor side effects and were able to carry on their normal life activities.  Unfortunately, that did not happen for me but many had no issues with it and were able to carry on their normal life activities

                                                                  Unfortunately, Interferon did not do the trick for me.  In January of this year my annual PET/CT showed t with two MET lesions on my left lung and I am not Stage 4B.  I asked my oncologist what the Interferon did for me and was told that it simply prolonged the MET.  I am currently on IPI with plans to PD-1 if there is no response to the IPI.

                                                                  Best of luck to you

                                                                  Cindy

                                                                   

                                                                  ckoch
                                                                  Participant

                                                                    Hi Michael,

                                                                     

                                                                    I was diagnosed with a 3C lesion on my cheek in 2010 and completed the 12 month Interferon protocal (same as planned for you, 4 weeks of IV then self injections).  My experience was exactly as it was described to me.  I could feel like I had a bad flu for a year…and that was exactly how I felt.  I was extremely fatigued, couldn't sit in an un-padded chair for more than 10 minutes without back and body aches starting.  I experienced a loss of appetite and subsequent weight, body aches, headaches, dry mouth and my hair became very thin.  It completey delbilitated me for a year.  I was not able to work or perform most normal activities.  I recall craving my favoite Carrott Cake so one day decided to make it.  What would have normally took me 30-45 minutes to throw together took me 5 hours!  I would do a little then lay down then repeat! 

                                                                    I discovered this site while going thru the Interferon and at that time there were quite a few people posting who were doing the same thing.  I recall that many of them had very minor side effects and were able to carry on their normal life activities.  Unfortunately, that did not happen for me but many had no issues with it and were able to carry on their normal life activities

                                                                    Unfortunately, Interferon did not do the trick for me.  In January of this year my annual PET/CT showed t with two MET lesions on my left lung and I am not Stage 4B.  I asked my oncologist what the Interferon did for me and was told that it simply prolonged the MET.  I am currently on IPI with plans to PD-1 if there is no response to the IPI.

                                                                    Best of luck to you

                                                                    Cindy

                                                                     

                                                                    BrianP
                                                                    Participant

                                                                      Michael,

                                                                      I did the HD/LD protocol from Dec 12 through Dec 13.  I probably had it better than most and it was still a pretty tough year.  I would not count on working the first month.  After the first month it is possible but a job where you are on your feet all day is going to be tough.  I went from about 178 down to about 140 during my year (I'm 5'9").  Unfortunately I advanced to stage IV last May.

                                                                      You may want to know would I do it again?  That's a tough question and like you hear repeated over and over, it's a personal decision.  I actually had enrolled in the IPI vs. Interferon trial in hope of getting IPI but was randomized into the interferon arm.  There were a few things that eventually convinced me to go with the interferon.  I figured it couldn't hurt to try it and I could always stop if the side effects got too bad.  The "couldn't hurt to try it" is debatable because some people complain of longterm mental fogginess and I had a nurse from NIH tell me it decreases your bone density.  In my own research I concluded from the data there wasn't enough benefit in regards to longterm survival to warrant the toxicities of the drug but the data did seem to indicate interferon could delay recurrence and to me that was enough to warrant the toxicities.  Delayed recurrence may seem insignificant but in this day and age of amazing advancements in treatments you never know what the difference even a few months delay in recurrence could mean in treatments available.  Lastly, at the time of my decision I had a 1 year old and a 3 year old.  I was going to do everything in my power to fight this beast.  I just could stand the thought of being on my death bed and wondering what would have happened if I had tried interferon. 

                                                                      Again those were all personal thoughts of why I went with interferon.  I will leave you with one more thought just to confuse you more.  There seems to be a stigma with "watch and wait" or "doing nothing".  I don't think you should feel that way at all if you decide not to do interferon.  There are a multitude of things you can do involving nutrition, excercise, supplements, psychological, and spiritual that can help you as much if not more than interferon can and rather than make you feel like crap will make you feel better than you ever have.  If you do decide to go with interferon please stay active on the board and I will definitely pass on some tips that can help you get through the year.  Best of luck to you.

                                                                      Brian

                                                                      BrianP
                                                                      Participant

                                                                        Michael,

                                                                        I did the HD/LD protocol from Dec 12 through Dec 13.  I probably had it better than most and it was still a pretty tough year.  I would not count on working the first month.  After the first month it is possible but a job where you are on your feet all day is going to be tough.  I went from about 178 down to about 140 during my year (I'm 5'9").  Unfortunately I advanced to stage IV last May.

                                                                        You may want to know would I do it again?  That's a tough question and like you hear repeated over and over, it's a personal decision.  I actually had enrolled in the IPI vs. Interferon trial in hope of getting IPI but was randomized into the interferon arm.  There were a few things that eventually convinced me to go with the interferon.  I figured it couldn't hurt to try it and I could always stop if the side effects got too bad.  The "couldn't hurt to try it" is debatable because some people complain of longterm mental fogginess and I had a nurse from NIH tell me it decreases your bone density.  In my own research I concluded from the data there wasn't enough benefit in regards to longterm survival to warrant the toxicities of the drug but the data did seem to indicate interferon could delay recurrence and to me that was enough to warrant the toxicities.  Delayed recurrence may seem insignificant but in this day and age of amazing advancements in treatments you never know what the difference even a few months delay in recurrence could mean in treatments available.  Lastly, at the time of my decision I had a 1 year old and a 3 year old.  I was going to do everything in my power to fight this beast.  I just could stand the thought of being on my death bed and wondering what would have happened if I had tried interferon. 

                                                                        Again those were all personal thoughts of why I went with interferon.  I will leave you with one more thought just to confuse you more.  There seems to be a stigma with "watch and wait" or "doing nothing".  I don't think you should feel that way at all if you decide not to do interferon.  There are a multitude of things you can do involving nutrition, excercise, supplements, psychological, and spiritual that can help you as much if not more than interferon can and rather than make you feel like crap will make you feel better than you ever have.  If you do decide to go with interferon please stay active on the board and I will definitely pass on some tips that can help you get through the year.  Best of luck to you.

                                                                        Brian

                                                                        BrianP
                                                                        Participant

                                                                          Michael,

                                                                          I did the HD/LD protocol from Dec 12 through Dec 13.  I probably had it better than most and it was still a pretty tough year.  I would not count on working the first month.  After the first month it is possible but a job where you are on your feet all day is going to be tough.  I went from about 178 down to about 140 during my year (I'm 5'9").  Unfortunately I advanced to stage IV last May.

                                                                          You may want to know would I do it again?  That's a tough question and like you hear repeated over and over, it's a personal decision.  I actually had enrolled in the IPI vs. Interferon trial in hope of getting IPI but was randomized into the interferon arm.  There were a few things that eventually convinced me to go with the interferon.  I figured it couldn't hurt to try it and I could always stop if the side effects got too bad.  The "couldn't hurt to try it" is debatable because some people complain of longterm mental fogginess and I had a nurse from NIH tell me it decreases your bone density.  In my own research I concluded from the data there wasn't enough benefit in regards to longterm survival to warrant the toxicities of the drug but the data did seem to indicate interferon could delay recurrence and to me that was enough to warrant the toxicities.  Delayed recurrence may seem insignificant but in this day and age of amazing advancements in treatments you never know what the difference even a few months delay in recurrence could mean in treatments available.  Lastly, at the time of my decision I had a 1 year old and a 3 year old.  I was going to do everything in my power to fight this beast.  I just could stand the thought of being on my death bed and wondering what would have happened if I had tried interferon. 

                                                                          Again those were all personal thoughts of why I went with interferon.  I will leave you with one more thought just to confuse you more.  There seems to be a stigma with "watch and wait" or "doing nothing".  I don't think you should feel that way at all if you decide not to do interferon.  There are a multitude of things you can do involving nutrition, excercise, supplements, psychological, and spiritual that can help you as much if not more than interferon can and rather than make you feel like crap will make you feel better than you ever have.  If you do decide to go with interferon please stay active on the board and I will definitely pass on some tips that can help you get through the year.  Best of luck to you.

                                                                          Brian

                                                                          Hstevens0072
                                                                          Participant

                                                                            Hi Mike,

                                                                            I was diagnosed in Dec 2010 stage 2b, did the SNL and WLE.  The only treatment offered was interferon, one month of infusions followed by 11 months of injections.  I took it.  In Dec 2011 I had clean scans, in January 2013 I was stage 4.

                                                                            i never second guess my choice.  It was hard, but manageable.  For the first month I worked in the morning, had the infusion in the afternoon then went home and went to bed.  I missed a couple of days of work but that was more to stay home and cry as I tried to wrap my head around the disease.  The first night of the shots was the worst, chills, sweats, aches and fever.

                                                                            I did take s/t disability for six weeks thinking if I could rest I would feel better. Wrong.  It just made me depressed sitting at home, er laying in bed all day.

                                                                            i finally found a routine that worked for me and my employer went along with it.

                                                                            Shots on Mon, We'd, Fri at 8 pm – sometimes Saturday night depending on weekend plans.  I'd take Tylenol, Benadryl  before every shot then hop into bed.  On Tuesday and Thursday I'd go in to work at noon and work a half day.  This way I was able to work 32 hours pretty comfortably and keep my full time benefits.

                                                                            i have two daughters and a husband.  My girls were teens at the time and all I could think of was that I wanted to be around for high school graduations, college and all that life holds for them.

                                                                            I don't regret my choice.  I'm still here.  Did it help me?  I'll never really know the answer to that, but I do know that I could not, would not, sit back and watch and wait.  But as others have said its a personal choice 😉

                                                                            i will also note that I did not lose any weight, my taste buds certainly went thru an overhaul but I found things with fat, like cake, tasted the best.

                                                                            as far as memory issues, yup I had a few.  But I'm happy to say once I finished the year and stopped interferon things popped right back into my head.

                                                                            whatever you decide I wish you the best.

                                                                            Holly

                                                                            Hstevens0072
                                                                            Participant

                                                                              Hi Mike,

                                                                              I was diagnosed in Dec 2010 stage 2b, did the SNL and WLE.  The only treatment offered was interferon, one month of infusions followed by 11 months of injections.  I took it.  In Dec 2011 I had clean scans, in January 2013 I was stage 4.

                                                                              i never second guess my choice.  It was hard, but manageable.  For the first month I worked in the morning, had the infusion in the afternoon then went home and went to bed.  I missed a couple of days of work but that was more to stay home and cry as I tried to wrap my head around the disease.  The first night of the shots was the worst, chills, sweats, aches and fever.

                                                                              I did take s/t disability for six weeks thinking if I could rest I would feel better. Wrong.  It just made me depressed sitting at home, er laying in bed all day.

                                                                              i finally found a routine that worked for me and my employer went along with it.

                                                                              Shots on Mon, We'd, Fri at 8 pm – sometimes Saturday night depending on weekend plans.  I'd take Tylenol, Benadryl  before every shot then hop into bed.  On Tuesday and Thursday I'd go in to work at noon and work a half day.  This way I was able to work 32 hours pretty comfortably and keep my full time benefits.

                                                                              i have two daughters and a husband.  My girls were teens at the time and all I could think of was that I wanted to be around for high school graduations, college and all that life holds for them.

                                                                              I don't regret my choice.  I'm still here.  Did it help me?  I'll never really know the answer to that, but I do know that I could not, would not, sit back and watch and wait.  But as others have said its a personal choice 😉

                                                                              i will also note that I did not lose any weight, my taste buds certainly went thru an overhaul but I found things with fat, like cake, tasted the best.

                                                                              as far as memory issues, yup I had a few.  But I'm happy to say once I finished the year and stopped interferon things popped right back into my head.

                                                                              whatever you decide I wish you the best.

                                                                              Holly

                                                                              Hstevens0072
                                                                              Participant

                                                                                Hi Mike,

                                                                                I was diagnosed in Dec 2010 stage 2b, did the SNL and WLE.  The only treatment offered was interferon, one month of infusions followed by 11 months of injections.  I took it.  In Dec 2011 I had clean scans, in January 2013 I was stage 4.

                                                                                i never second guess my choice.  It was hard, but manageable.  For the first month I worked in the morning, had the infusion in the afternoon then went home and went to bed.  I missed a couple of days of work but that was more to stay home and cry as I tried to wrap my head around the disease.  The first night of the shots was the worst, chills, sweats, aches and fever.

                                                                                I did take s/t disability for six weeks thinking if I could rest I would feel better. Wrong.  It just made me depressed sitting at home, er laying in bed all day.

                                                                                i finally found a routine that worked for me and my employer went along with it.

                                                                                Shots on Mon, We'd, Fri at 8 pm – sometimes Saturday night depending on weekend plans.  I'd take Tylenol, Benadryl  before every shot then hop into bed.  On Tuesday and Thursday I'd go in to work at noon and work a half day.  This way I was able to work 32 hours pretty comfortably and keep my full time benefits.

                                                                                i have two daughters and a husband.  My girls were teens at the time and all I could think of was that I wanted to be around for high school graduations, college and all that life holds for them.

                                                                                I don't regret my choice.  I'm still here.  Did it help me?  I'll never really know the answer to that, but I do know that I could not, would not, sit back and watch and wait.  But as others have said its a personal choice 😉

                                                                                i will also note that I did not lose any weight, my taste buds certainly went thru an overhaul but I found things with fat, like cake, tasted the best.

                                                                                as far as memory issues, yup I had a few.  But I'm happy to say once I finished the year and stopped interferon things popped right back into my head.

                                                                                whatever you decide I wish you the best.

                                                                                Holly

                                                                                  palmspringswalt
                                                                                  Participant

                                                                                    Get a second opinion at The Angeles Clinic or one of the other Melanoma centers of excellence!!  I did and it was well worth the small cost.  I followed their advice and started in a PD1 trial that had just opened in early 2012.  There are other trials.  

                                                                                    palmspringswalt
                                                                                    Participant

                                                                                      Get a second opinion at The Angeles Clinic or one of the other Melanoma centers of excellence!!  I did and it was well worth the small cost.  I followed their advice and started in a PD1 trial that had just opened in early 2012.  There are other trials.  

                                                                                      palmspringswalt
                                                                                      Participant

                                                                                        Get a second opinion at The Angeles Clinic or one of the other Melanoma centers of excellence!!  I did and it was well worth the small cost.  I followed their advice and started in a PD1 trial that had just opened in early 2012.  There are other trials.  

                                                                                      ecc26
                                                                                      Participant

                                                                                        Sometimes I get really angry when people ask a question about a treatment and others immediately jump all over them and tell them their doctor isn't up to date or they're just plain wrong. That's their opinion, not a fact. They get to make their own choices, but this is YOUR choice. The only thing anyone should be posting is "Yes, I tried that and here's my experience" or "No, I decided against it and here's why". NO ONE should be telling you what to do- that's between you and your doctor(s) and NO ONE should be telling you you're wrong for considering it. This board is supposed to be supportive, not dismissive or condemning!

                                                                                        You're stage 3a and there aren't many options. I was 3b at diagnosis and was given the same choice. I went with the full year of interferon and I am NOT, I repeat NOT sorry. Yes, it was tough, especially the first month of high dose, but it eases up a lot after that and my most common side effect was fevers. I took the injections at night so I could sleep through most of the worst of it. I felt frustrated with the lack of energy for a while, but readjusted to my new, temporary "normal". Since then yes, I have progressed, but I had a very aggressive primary tumor and it wasnt' really that big of a surprise. Did interferon help? I will never know, but I'm still not sorry I went for it because now I know I did everything I could at every stage of my battle. 

                                                                                        and FYI- both my doctors and myself are completely "up to date". I'm a young medical proffesional and wouldn't tolerate anything less. 

                                                                                        You said you were on your feet all day for your job and so were thinking of cutting back to part time. If you decide to go with interferon, I think you'll need the full first month (and maybe an extra week at the end) completely off. That month is tough- I didn't really start getting hit until the second week, but everyone rects differently so I would plan on taking that month off. It's a definite possibility to do some work after that, but again, everyone's different. You can arrange your dosing schedule so that you feel better on the days you want to work. I found that I didn't feel great the morning after I took a dose, but by afternoon was starting to feel ok and since they're every other day, the day leading up to the next dose I felt relatively normal. For example, If I took a dose on Mon, I didn't feel great Tues morning, but by afternoon was starting to feel ok. Then all day Wed I'd feel pretty good, until bed time when I took the next dose.

                                                                                        This is your decision: ignore anyone trying to tell you what to do. Weigh your options with your doctor and your family, and make the best decision for YOU; not for someone else. Then move forward and never look back.

                                                                                        ecc26
                                                                                        Participant

                                                                                          Sometimes I get really angry when people ask a question about a treatment and others immediately jump all over them and tell them their doctor isn't up to date or they're just plain wrong. That's their opinion, not a fact. They get to make their own choices, but this is YOUR choice. The only thing anyone should be posting is "Yes, I tried that and here's my experience" or "No, I decided against it and here's why". NO ONE should be telling you what to do- that's between you and your doctor(s) and NO ONE should be telling you you're wrong for considering it. This board is supposed to be supportive, not dismissive or condemning!

                                                                                          You're stage 3a and there aren't many options. I was 3b at diagnosis and was given the same choice. I went with the full year of interferon and I am NOT, I repeat NOT sorry. Yes, it was tough, especially the first month of high dose, but it eases up a lot after that and my most common side effect was fevers. I took the injections at night so I could sleep through most of the worst of it. I felt frustrated with the lack of energy for a while, but readjusted to my new, temporary "normal". Since then yes, I have progressed, but I had a very aggressive primary tumor and it wasnt' really that big of a surprise. Did interferon help? I will never know, but I'm still not sorry I went for it because now I know I did everything I could at every stage of my battle. 

                                                                                          and FYI- both my doctors and myself are completely "up to date". I'm a young medical proffesional and wouldn't tolerate anything less. 

                                                                                          You said you were on your feet all day for your job and so were thinking of cutting back to part time. If you decide to go with interferon, I think you'll need the full first month (and maybe an extra week at the end) completely off. That month is tough- I didn't really start getting hit until the second week, but everyone rects differently so I would plan on taking that month off. It's a definite possibility to do some work after that, but again, everyone's different. You can arrange your dosing schedule so that you feel better on the days you want to work. I found that I didn't feel great the morning after I took a dose, but by afternoon was starting to feel ok and since they're every other day, the day leading up to the next dose I felt relatively normal. For example, If I took a dose on Mon, I didn't feel great Tues morning, but by afternoon was starting to feel ok. Then all day Wed I'd feel pretty good, until bed time when I took the next dose.

                                                                                          This is your decision: ignore anyone trying to tell you what to do. Weigh your options with your doctor and your family, and make the best decision for YOU; not for someone else. Then move forward and never look back.

                                                                                            spot
                                                                                            Participant

                                                                                              Thank you for this post.  I have stage 3a.  I have been reading how my Dr. is not up to date.  This post has helped me..omg living in SC, going to the best Drs… but I do have to decide to do tx or not.  I will loose my job if I stay out of work, but will I loose my life??  Tough decision

                                                                                              spot
                                                                                              Participant

                                                                                                Thank you for this post.  I have stage 3a.  I have been reading how my Dr. is not up to date.  This post has helped me..omg living in SC, going to the best Drs… but I do have to decide to do tx or not.  I will loose my job if I stay out of work, but will I loose my life??  Tough decision

                                                                                                spot
                                                                                                Participant

                                                                                                  Thank you for this post.  I have stage 3a.  I have been reading how my Dr. is not up to date.  This post has helped me..omg living in SC, going to the best Drs… but I do have to decide to do tx or not.  I will loose my job if I stay out of work, but will I loose my life??  Tough decision

                                                                                                ecc26
                                                                                                Participant

                                                                                                  Sometimes I get really angry when people ask a question about a treatment and others immediately jump all over them and tell them their doctor isn't up to date or they're just plain wrong. That's their opinion, not a fact. They get to make their own choices, but this is YOUR choice. The only thing anyone should be posting is "Yes, I tried that and here's my experience" or "No, I decided against it and here's why". NO ONE should be telling you what to do- that's between you and your doctor(s) and NO ONE should be telling you you're wrong for considering it. This board is supposed to be supportive, not dismissive or condemning!

                                                                                                  You're stage 3a and there aren't many options. I was 3b at diagnosis and was given the same choice. I went with the full year of interferon and I am NOT, I repeat NOT sorry. Yes, it was tough, especially the first month of high dose, but it eases up a lot after that and my most common side effect was fevers. I took the injections at night so I could sleep through most of the worst of it. I felt frustrated with the lack of energy for a while, but readjusted to my new, temporary "normal". Since then yes, I have progressed, but I had a very aggressive primary tumor and it wasnt' really that big of a surprise. Did interferon help? I will never know, but I'm still not sorry I went for it because now I know I did everything I could at every stage of my battle. 

                                                                                                  and FYI- both my doctors and myself are completely "up to date". I'm a young medical proffesional and wouldn't tolerate anything less. 

                                                                                                  You said you were on your feet all day for your job and so were thinking of cutting back to part time. If you decide to go with interferon, I think you'll need the full first month (and maybe an extra week at the end) completely off. That month is tough- I didn't really start getting hit until the second week, but everyone rects differently so I would plan on taking that month off. It's a definite possibility to do some work after that, but again, everyone's different. You can arrange your dosing schedule so that you feel better on the days you want to work. I found that I didn't feel great the morning after I took a dose, but by afternoon was starting to feel ok and since they're every other day, the day leading up to the next dose I felt relatively normal. For example, If I took a dose on Mon, I didn't feel great Tues morning, but by afternoon was starting to feel ok. Then all day Wed I'd feel pretty good, until bed time when I took the next dose.

                                                                                                  This is your decision: ignore anyone trying to tell you what to do. Weigh your options with your doctor and your family, and make the best decision for YOU; not for someone else. Then move forward and never look back.

                                                                                                  bj63
                                                                                                  Participant

                                                                                                    I did the Interferon regimine after I was first diagnosed as Stage III in 2010.  Did eight weeks of high-dose IV's followed by (what was supposed to be) 12 months of self injections through 2011 and into 2012.  I had to lay off the injections several times due to high liver enzymes and eventually discontinued the Interferon altogether after the 7th month.

                                                                                                    I had flu-like symptoms pretty much the entire time, especially when I was on the IV's.  I just went home and slept for most of the time.  After that initial induction phase, I was on a 7-day regimine of 5 days with shots and two days off.   When I first took my shots on Monday mornings, I always ran a fever of at least 100 – 101°.  Each successive day, my temperature would spike a little less, until Friday, when I hardly felt feverish at all.  Once I got several weeks into the treatment the fever would spike slightly less, but I never took shots without having a fever.  My doctor had me take Tylenol an hour before the injections, but I don't think it helped all that much.

                                                                                                    My melanoma returned about 10 months after I stopped the Interferon.  I'll never know if it really made a difference – maybe it bought me some time?  How would one really know?  Statistically speaking, Interferon effectiveness as an adjuvant therapy is pretty low.

                                                                                                    Knowing what I know now, I would at least ask about the availability of a clinical trial for Stage 3 patients using one of the newer immunotherapy drugs such as ipilumimab.  Your doctor also should be testing your tumor for genetic markers such as the BRAF that might point to treating with a specific drug or class of drugs, especially down the road if your situation does not improve or worsens.

                                                                                                    Of course, everybody is different and there is no 100% right or wrong answer.  These are things you have to weigh with your doctor and your family and decide for yourself.

                                                                                                    Wishing you the best of luck in your journey,

                                                                                                    bj63

                                                                                                    bj63
                                                                                                    Participant

                                                                                                      I did the Interferon regimine after I was first diagnosed as Stage III in 2010.  Did eight weeks of high-dose IV's followed by (what was supposed to be) 12 months of self injections through 2011 and into 2012.  I had to lay off the injections several times due to high liver enzymes and eventually discontinued the Interferon altogether after the 7th month.

                                                                                                      I had flu-like symptoms pretty much the entire time, especially when I was on the IV's.  I just went home and slept for most of the time.  After that initial induction phase, I was on a 7-day regimine of 5 days with shots and two days off.   When I first took my shots on Monday mornings, I always ran a fever of at least 100 – 101°.  Each successive day, my temperature would spike a little less, until Friday, when I hardly felt feverish at all.  Once I got several weeks into the treatment the fever would spike slightly less, but I never took shots without having a fever.  My doctor had me take Tylenol an hour before the injections, but I don't think it helped all that much.

                                                                                                      My melanoma returned about 10 months after I stopped the Interferon.  I'll never know if it really made a difference – maybe it bought me some time?  How would one really know?  Statistically speaking, Interferon effectiveness as an adjuvant therapy is pretty low.

                                                                                                      Knowing what I know now, I would at least ask about the availability of a clinical trial for Stage 3 patients using one of the newer immunotherapy drugs such as ipilumimab.  Your doctor also should be testing your tumor for genetic markers such as the BRAF that might point to treating with a specific drug or class of drugs, especially down the road if your situation does not improve or worsens.

                                                                                                      Of course, everybody is different and there is no 100% right or wrong answer.  These are things you have to weigh with your doctor and your family and decide for yourself.

                                                                                                      Wishing you the best of luck in your journey,

                                                                                                      bj63

                                                                                                        gaby
                                                                                                        Participant

                                                                                                          Hello Michael ,

                                                                                                          My husband is stage IIIa from june 2012 At that time the oncologist gave him two optiones:  watch and wait  or pegylated interferon for 2 years. He did not felt comfortable with doing nothing, then try pegylated interferon wanted .

                                                                                                           

                                                                                                          Interferon is a variant of pegylated interferon , which according to statistics is more effective than interferon alfa , and is more tolerable. Should be to consult the doctor about pegyldo interferon (intron or sylantron )

                                                                                                          MY husband is with pegylated interferon since October 2012, he has a normal life , working full time. The  most annoying symptom is fatigue. My husband is now 40 years old, he  has its scan every 6 months and blood checks , the last scan showed enlarged lymph then made ​​a PET_CT

                                                                                                           The PET showed some hot spots in the enlarged nodes SUV 2.5 do not know if it's the inflammatory effect of interferon or recurrence of melanoma. At the end of this month to repeat the PET , hopefully everything like this .

                                                                                                          transcribe a post I wrote about treatment with interferon

                                                                                                          You can ask me whatever you want.

                                                                                                          FOr what I see in your photo is a young person, you should be able to tolerate interferon

                                                                                                          POST:

                                                                                                          I will tell us  my husband experience with pegylated interferon since October 2012.

                                                                                                          Side effects that my husband has after the first month and still continue:

                                                                                                          Hairloss

                                                                                                          dry skin

                                                                                                          problems with vision and teeth

                                                                                                          joint pains

                                                                                                          loss of muscle mass

                                                                                                          headache

                                                                                                          fatigue, fatigue and fatigue! this is the worst

                                                                                                          insomnia

                                                                                                          some anemia

                                                                                                          increased triglycerides

                                                                                                          increase in transaminases (liver damage)

                                                                                                          sometimes dizziness and memory loss

                                                                                                          loss of concentration

                                                                                                           

                                                                                                          The first two months were high doses, then half of the dose.

                                                                                                          Despite all He is living a normal life, and  working full time.

                                                                                                           

                                                                                                          While there are no guarantees, my husband wanted to do the treatment.

                                                                                                           

                                                                                                          Greetings from Argentina

                                                                                                          gaby

                                                                                                           

                                                                                                          gaby
                                                                                                          Participant

                                                                                                            Hello Michael ,

                                                                                                            My husband is stage IIIa from june 2012 At that time the oncologist gave him two optiones:  watch and wait  or pegylated interferon for 2 years. He did not felt comfortable with doing nothing, then try pegylated interferon wanted .

                                                                                                             

                                                                                                            Interferon is a variant of pegylated interferon , which according to statistics is more effective than interferon alfa , and is more tolerable. Should be to consult the doctor about pegyldo interferon (intron or sylantron )

                                                                                                            MY husband is with pegylated interferon since October 2012, he has a normal life , working full time. The  most annoying symptom is fatigue. My husband is now 40 years old, he  has its scan every 6 months and blood checks , the last scan showed enlarged lymph then made ​​a PET_CT

                                                                                                             The PET showed some hot spots in the enlarged nodes SUV 2.5 do not know if it's the inflammatory effect of interferon or recurrence of melanoma. At the end of this month to repeat the PET , hopefully everything like this .

                                                                                                            transcribe a post I wrote about treatment with interferon

                                                                                                            You can ask me whatever you want.

                                                                                                            FOr what I see in your photo is a young person, you should be able to tolerate interferon

                                                                                                            POST:

                                                                                                            I will tell us  my husband experience with pegylated interferon since October 2012.

                                                                                                            Side effects that my husband has after the first month and still continue:

                                                                                                            Hairloss

                                                                                                            dry skin

                                                                                                            problems with vision and teeth

                                                                                                            joint pains

                                                                                                            loss of muscle mass

                                                                                                            headache

                                                                                                            fatigue, fatigue and fatigue! this is the worst

                                                                                                            insomnia

                                                                                                            some anemia

                                                                                                            increased triglycerides

                                                                                                            increase in transaminases (liver damage)

                                                                                                            sometimes dizziness and memory loss

                                                                                                            loss of concentration

                                                                                                             

                                                                                                            The first two months were high doses, then half of the dose.

                                                                                                            Despite all He is living a normal life, and  working full time.

                                                                                                             

                                                                                                            While there are no guarantees, my husband wanted to do the treatment.

                                                                                                             

                                                                                                            Greetings from Argentina

                                                                                                            gaby

                                                                                                             

                                                                                                            gaby
                                                                                                            Participant

                                                                                                              Hello Michael ,

                                                                                                              My husband is stage IIIa from june 2012 At that time the oncologist gave him two optiones:  watch and wait  or pegylated interferon for 2 years. He did not felt comfortable with doing nothing, then try pegylated interferon wanted .

                                                                                                               

                                                                                                              Interferon is a variant of pegylated interferon , which according to statistics is more effective than interferon alfa , and is more tolerable. Should be to consult the doctor about pegyldo interferon (intron or sylantron )

                                                                                                              MY husband is with pegylated interferon since October 2012, he has a normal life , working full time. The  most annoying symptom is fatigue. My husband is now 40 years old, he  has its scan every 6 months and blood checks , the last scan showed enlarged lymph then made ​​a PET_CT

                                                                                                               The PET showed some hot spots in the enlarged nodes SUV 2.5 do not know if it's the inflammatory effect of interferon or recurrence of melanoma. At the end of this month to repeat the PET , hopefully everything like this .

                                                                                                              transcribe a post I wrote about treatment with interferon

                                                                                                              You can ask me whatever you want.

                                                                                                              FOr what I see in your photo is a young person, you should be able to tolerate interferon

                                                                                                              POST:

                                                                                                              I will tell us  my husband experience with pegylated interferon since October 2012.

                                                                                                              Side effects that my husband has after the first month and still continue:

                                                                                                              Hairloss

                                                                                                              dry skin

                                                                                                              problems with vision and teeth

                                                                                                              joint pains

                                                                                                              loss of muscle mass

                                                                                                              headache

                                                                                                              fatigue, fatigue and fatigue! this is the worst

                                                                                                              insomnia

                                                                                                              some anemia

                                                                                                              increased triglycerides

                                                                                                              increase in transaminases (liver damage)

                                                                                                              sometimes dizziness and memory loss

                                                                                                              loss of concentration

                                                                                                               

                                                                                                              The first two months were high doses, then half of the dose.

                                                                                                              Despite all He is living a normal life, and  working full time.

                                                                                                               

                                                                                                              While there are no guarantees, my husband wanted to do the treatment.

                                                                                                               

                                                                                                              Greetings from Argentina

                                                                                                              gaby

                                                                                                               

                                                                                                            bj63
                                                                                                            Participant

                                                                                                              I did the Interferon regimine after I was first diagnosed as Stage III in 2010.  Did eight weeks of high-dose IV's followed by (what was supposed to be) 12 months of self injections through 2011 and into 2012.  I had to lay off the injections several times due to high liver enzymes and eventually discontinued the Interferon altogether after the 7th month.

                                                                                                              I had flu-like symptoms pretty much the entire time, especially when I was on the IV's.  I just went home and slept for most of the time.  After that initial induction phase, I was on a 7-day regimine of 5 days with shots and two days off.   When I first took my shots on Monday mornings, I always ran a fever of at least 100 – 101°.  Each successive day, my temperature would spike a little less, until Friday, when I hardly felt feverish at all.  Once I got several weeks into the treatment the fever would spike slightly less, but I never took shots without having a fever.  My doctor had me take Tylenol an hour before the injections, but I don't think it helped all that much.

                                                                                                              My melanoma returned about 10 months after I stopped the Interferon.  I'll never know if it really made a difference – maybe it bought me some time?  How would one really know?  Statistically speaking, Interferon effectiveness as an adjuvant therapy is pretty low.

                                                                                                              Knowing what I know now, I would at least ask about the availability of a clinical trial for Stage 3 patients using one of the newer immunotherapy drugs such as ipilumimab.  Your doctor also should be testing your tumor for genetic markers such as the BRAF that might point to treating with a specific drug or class of drugs, especially down the road if your situation does not improve or worsens.

                                                                                                              Of course, everybody is different and there is no 100% right or wrong answer.  These are things you have to weigh with your doctor and your family and decide for yourself.

                                                                                                              Wishing you the best of luck in your journey,

                                                                                                              bj63

                                                                                                              BostonTerrierFan
                                                                                                              Participant

                                                                                                                Hi Michael. I am stage 3a, and I will be starting my course of interferon-a this Monday, so it sounds like we are in very similar situations. (Before anyone on this post yells at me about my decision; I am being treated at a world renowned cancer hospital with melanoma specialists, and this course of treatment was recommended.) If you decide to do the treatment, and you uncover a good technique for dealing with the side effects of the treatment, please pass the the information along. I will certainly be happy to do the same. I also have a job that has long hours and is extremely physically demanding, so any survival strategies would be appreciated. Best of luck to you in your decision, and treatment (if that is your choice). 

                                                                                                                BostonTerrierFan
                                                                                                                Participant

                                                                                                                  Hi Michael. I am stage 3a, and I will be starting my course of interferon-a this Monday, so it sounds like we are in very similar situations. (Before anyone on this post yells at me about my decision; I am being treated at a world renowned cancer hospital with melanoma specialists, and this course of treatment was recommended.) If you decide to do the treatment, and you uncover a good technique for dealing with the side effects of the treatment, please pass the the information along. I will certainly be happy to do the same. I also have a job that has long hours and is extremely physically demanding, so any survival strategies would be appreciated. Best of luck to you in your decision, and treatment (if that is your choice). 

                                                                                                                  BostonTerrierFan
                                                                                                                  Participant

                                                                                                                    Hi Michael. I am stage 3a, and I will be starting my course of interferon-a this Monday, so it sounds like we are in very similar situations. (Before anyone on this post yells at me about my decision; I am being treated at a world renowned cancer hospital with melanoma specialists, and this course of treatment was recommended.) If you decide to do the treatment, and you uncover a good technique for dealing with the side effects of the treatment, please pass the the information along. I will certainly be happy to do the same. I also have a job that has long hours and is extremely physically demanding, so any survival strategies would be appreciated. Best of luck to you in your decision, and treatment (if that is your choice). 

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