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Pegylated Interferon?

Forums General Melanoma Community Pegylated Interferon?

  • Post
    ChristineL
    Participant

      Anyone have experience with peg interferon?  For me at stage IIIB it's one of two options since I don't qualify for any trials (it's either that or regular interferon).  I'm extremely hesitant to do Interferon for a lot of reasons, and supposedly peg interferon has fewer side effects, although it's a 5 year regimen (instead of the 1 year).  I'd love to hear thoughts on this!

      Thanks a ton,

      ChristineL

      Anyone have experience with peg interferon?  For me at stage IIIB it's one of two options since I don't qualify for any trials (it's either that or regular interferon).  I'm extremely hesitant to do Interferon for a lot of reasons, and supposedly peg interferon has fewer side effects, although it's a 5 year regimen (instead of the 1 year).  I'd love to hear thoughts on this!

      Thanks a ton,

      ChristineL

    Viewing 10 reply threads
    • Replies
        Jerry from Cape Cod
        Participant

          Hi Christine,

          It looks like not too many have experience with Peglated Interferon.  I thought I'd respond to get it back into the top mix.

          Jerry from Cape Cod

          Jerry from Cape Cod
          Participant

            Hi Christine,

            It looks like not too many have experience with Peglated Interferon.  I thought I'd respond to get it back into the top mix.

            Jerry from Cape Cod

            Fen
            Participant

              Christine – my husband has done peg interferon for hepatitis so here is his response.

              "Pegalated means they put glycol on it to make it a bigger molecule so it  is supposed to stay in the system longer.  I can't tell about dosage because they come in different units and the dose for melanoma is a lot stronger. "  

              The peg interferon didn't work any better on his hepatitis, but that is just him and his hepatitis is particularly resistant to treatment.  I do know he was very fatigued over the time he took it.  

               I'm guessing that the controversy over year long regular interferon use can be applied to peg interferon too.

              good luck!

                ChristineL
                Participant

                  Thanks for the replies.  It was approved for mel in '09, and there were trials done in Europe with results published in '08 and Dr. Eggermont spoke about it at a conference earlier this year.  I guess word hasn't really crossed the puddle yet for people to give it a try, but figured I'd ask anyway.  My oncologist was shocked that I had even heard of it! 

                  Thanks again!!

                  ChristineL

                  ChristineL
                  Participant

                    Thanks for the replies.  It was approved for mel in '09, and there were trials done in Europe with results published in '08 and Dr. Eggermont spoke about it at a conference earlier this year.  I guess word hasn't really crossed the puddle yet for people to give it a try, but figured I'd ask anyway.  My oncologist was shocked that I had even heard of it! 

                    Thanks again!!

                    ChristineL

                  Fen
                  Participant

                    Christine – my husband has done peg interferon for hepatitis so here is his response.

                    "Pegalated means they put glycol on it to make it a bigger molecule so it  is supposed to stay in the system longer.  I can't tell about dosage because they come in different units and the dose for melanoma is a lot stronger. "  

                    The peg interferon didn't work any better on his hepatitis, but that is just him and his hepatitis is particularly resistant to treatment.  I do know he was very fatigued over the time he took it.  

                     I'm guessing that the controversy over year long regular interferon use can be applied to peg interferon too.

                    good luck!

                    ValinMtl
                    Participant

                      Hi Christine

                      The only thing I knew about pegylated interferon was that it was in use for hepatitis so now it's available for mel eh?  I know you have some big decisions to be made soon and I am thinking of you.  One thing, I find is that interferon seems to work better with younger people..e.g. has held mel off for over 15 years for my young friend Dave..his was on his arm with unknown primary!! but didn't work for me..dang, I'm much older.. so your youth and thus better immune system will be advantageous, plus you eat healthy!!

                      Val

                        Jerry from Cape Cod
                        Participant

                          That's because she grows good veggies!!!

                          Jerry from Cape Cod

                          ChristineL
                          Participant

                            If nobody buys them, SOMEBODY has to eat them- waste not, want not.  🙂

                            Cheers,

                            ChristineL

                            ChristineL
                            Participant

                              If nobody buys them, SOMEBODY has to eat them- waste not, want not.  🙂

                              Cheers,

                              ChristineL

                              Jerry from Cape Cod
                              Participant

                                That's because she grows good veggies!!!

                                Jerry from Cape Cod

                              ValinMtl
                              Participant

                                Hi Christine

                                The only thing I knew about pegylated interferon was that it was in use for hepatitis so now it's available for mel eh?  I know you have some big decisions to be made soon and I am thinking of you.  One thing, I find is that interferon seems to work better with younger people..e.g. has held mel off for over 15 years for my young friend Dave..his was on his arm with unknown primary!! but didn't work for me..dang, I'm much older.. so your youth and thus better immune system will be advantageous, plus you eat healthy!!

                                Val

                                Jacqueline
                                Participant

                                  Hi ChristineL,

                                  I realize this reply is a little late but I was on a peg interferon trial in 2007. I was told that the symptoms are less severe than the standard dose…can't testify to that though! Good news is that I am still cancer free. I was at stage III when diagnosed. I had a total lymphandectomy in my right groin and pelvis.  7 lymph nodes were positive. I was only on interferon for one year and also had radiation.  But again, I am cancer free.  The treatment was a beast, however. I was in the first semester of my doctoral program when diagnosed.  I had to take time off to complete the treatment.  I was extremely fatigued, cold, could not drink anything with ice(everything was room temp), I lost my appetite and weight, and there were days that I was extremely achy…to the point of not wanting to be touched. However, these were not consistent symptoms.  I am just telling the worst. Overall, it was a necessary part of my treatment and most importantly I survived to tell the tale.

                                  Good luck in your treatment and best wishes for a cancer free existence!

                                  Jacqueline

                                    Melanoma Mom
                                    Participant

                                      Would it be beneficial to start it almost a year after your diagnosis?

                                      A treatment plan of five years would be a deterrent for me, only because of Interferon's low success rates. I continue to wonder if my son is going through all this for naught, but how is one to know. We are just trying to "power" through this year and get it done. Five years of treatment sounds endless ….. but then again, five years of life sounds glorious!

                                      Melanoma Mom
                                      Participant

                                        Would it be beneficial to start it almost a year after your diagnosis?

                                        A treatment plan of five years would be a deterrent for me, only because of Interferon's low success rates. I continue to wonder if my son is going through all this for naught, but how is one to know. We are just trying to "power" through this year and get it done. Five years of treatment sounds endless ….. but then again, five years of life sounds glorious!

                                        EmilyandMike
                                        Participant

                                          Since this thread remerged recently, I wanted to add that last week the the FDA approved Sylatron (Peg-Interferon) for Stage III.  Here is a good overview for those who are interested:

                                          http://www.ecancermedicalscience.com/news-insider-news.asp?itemId=1704 

                                          Thanks

                                          Emily

                                          http://www.emandmichael.com

                                          John R
                                          Participant

                                            I considered this treatment last year when diagnosed but insurance would not pay for it since it was only approved for treatment of Hepatitis.  Now that it has been approved for Melanoma it might be a different story.

                                            John R
                                            Participant

                                              I considered this treatment last year when diagnosed but insurance would not pay for it since it was only approved for treatment of Hepatitis.  Now that it has been approved for Melanoma it might be a different story.

                                              EmilyandMike
                                              Participant

                                                Since this thread remerged recently, I wanted to add that last week the the FDA approved Sylatron (Peg-Interferon) for Stage III.  Here is a good overview for those who are interested:

                                                http://www.ecancermedicalscience.com/news-insider-news.asp?itemId=1704 

                                                Thanks

                                                Emily

                                                http://www.emandmichael.com

                                                Jacqueline
                                                Participant

                                                  It would be best to consult your son's medical oncologist.  I suggest following their recommendations.  With cancer, there is always uncertainty.  We never know how successful our treatment will be but we can always hope and have faith! I know that is not much reassurance but you have to trust your doctors and yourself to chose the correct treatment.  Good luck!

                                                  KansasGirl73
                                                  Participant

                                                    Hello…   I was wondering if anyone out there has tried this treatment (Peginterferon) since its FDA approval earlier this year.   My oncologist has recently recommended it for me.   I tried the traditional Interferon, but only got thru a handful of my IV treatments before the side effects were too much for me.  After allowing some time to rest and heal a bit more, this is the course of action he thinks is best.   I'm starting in just a few weeks, and I'll admit, after trying regular Interferon, I'm a bit nervous.    Any words of wisdom?

                                                    KansasGirl73
                                                    Participant

                                                      Hello…   I was wondering if anyone out there has tried this treatment (Peginterferon) since its FDA approval earlier this year.   My oncologist has recently recommended it for me.   I tried the traditional Interferon, but only got thru a handful of my IV treatments before the side effects were too much for me.  After allowing some time to rest and heal a bit more, this is the course of action he thinks is best.   I'm starting in just a few weeks, and I'll admit, after trying regular Interferon, I'm a bit nervous.    Any words of wisdom?

                                                      KansasGirl73
                                                      Participant

                                                        Hello…   I was wondering if anyone out there has tried this treatment (Peginterferon) since its FDA approval earlier this year.   My oncologist has recently recommended it for me.   I tried the traditional Interferon, but only got thru a handful of my IV treatments before the side effects were too much for me.  After allowing some time to rest and heal a bit more, this is the course of action he thinks is best.   I'm starting in just a few weeks, and I'll admit, after trying regular Interferon, I'm a bit nervous.    Any words of wisdom?

                                                        Jacqueline
                                                        Participant

                                                          Hello there,

                                                          I was on Peginterferon when it was in the clinical trial stage (this was in 2007).  Unfortunately, I did not complete five years of treatment…I didn't even complete one year. I was not prepared for the side effects (mind you I was in my 20s at the time).  However, considering you are coming off the standard course of interferon, the symptoms might not be as bad for you. I was in the process of trying to return to school to complete my doctoral program and realized there was no way that would happen while I was on peg-intron. Good news…I did complete a course of radiation and couple with the six months of pegylated intereron I have been NED since 2007.

                                                          My advice: give it a try. The worse thing that can happen is you pull out early.

                                                          Keep smiling and looking to tomorrow,

                                                          Jacqueline

                                                          Jacqueline
                                                          Participant

                                                            Hello there,

                                                            I was on Peginterferon when it was in the clinical trial stage (this was in 2007).  Unfortunately, I did not complete five years of treatment…I didn't even complete one year. I was not prepared for the side effects (mind you I was in my 20s at the time).  However, considering you are coming off the standard course of interferon, the symptoms might not be as bad for you. I was in the process of trying to return to school to complete my doctoral program and realized there was no way that would happen while I was on peg-intron. Good news…I did complete a course of radiation and couple with the six months of pegylated intereron I have been NED since 2007.

                                                            My advice: give it a try. The worse thing that can happen is you pull out early.

                                                            Keep smiling and looking to tomorrow,

                                                            Jacqueline

                                                            Jacqueline
                                                            Participant

                                                              Hello there,

                                                              I was on Peginterferon when it was in the clinical trial stage (this was in 2007).  Unfortunately, I did not complete five years of treatment…I didn't even complete one year. I was not prepared for the side effects (mind you I was in my 20s at the time).  However, considering you are coming off the standard course of interferon, the symptoms might not be as bad for you. I was in the process of trying to return to school to complete my doctoral program and realized there was no way that would happen while I was on peg-intron. Good news…I did complete a course of radiation and couple with the six months of pegylated intereron I have been NED since 2007.

                                                              My advice: give it a try. The worse thing that can happen is you pull out early.

                                                              Keep smiling and looking to tomorrow,

                                                              Jacqueline

                                                              eaca
                                                              Participant

                                                                Hi KansasGirl,

                                                                I am currently on a trial with Peginterferon and just wanted to reply to your question (also look up other posts by me, as I gave a longer explanation of my reactions when I started).  I can't compare with regular interferon, of course, since I've only done the peg, but I am not finding it too difficult.  The worst was for the two days after the very first injection, but since then everything is tolerable and I haven't had any horrible side-effects.  I'm on week 9 of a high dose regime which goes down to a lower dose at 12 weeks.  Injections once a week.  Generally I'm slightly fatigued and short of breath and have lower energy than normal, but I can certainly function and go to work as usual.  I've had occasional headaches, dry mouth and am starting to get some itchy skin.  That's the full disclosure at this point.

                                                                Good luck with your decision.  Definitely try it out and I hope that the side-effects are tolerable for you too!

                                                                Elisa

                                                                eaca
                                                                Participant

                                                                  Hi KansasGirl,

                                                                  I am currently on a trial with Peginterferon and just wanted to reply to your question (also look up other posts by me, as I gave a longer explanation of my reactions when I started).  I can't compare with regular interferon, of course, since I've only done the peg, but I am not finding it too difficult.  The worst was for the two days after the very first injection, but since then everything is tolerable and I haven't had any horrible side-effects.  I'm on week 9 of a high dose regime which goes down to a lower dose at 12 weeks.  Injections once a week.  Generally I'm slightly fatigued and short of breath and have lower energy than normal, but I can certainly function and go to work as usual.  I've had occasional headaches, dry mouth and am starting to get some itchy skin.  That's the full disclosure at this point.

                                                                  Good luck with your decision.  Definitely try it out and I hope that the side-effects are tolerable for you too!

                                                                  Elisa

                                                                  eaca
                                                                  Participant

                                                                    Hi KansasGirl,

                                                                    I am currently on a trial with Peginterferon and just wanted to reply to your question (also look up other posts by me, as I gave a longer explanation of my reactions when I started).  I can't compare with regular interferon, of course, since I've only done the peg, but I am not finding it too difficult.  The worst was for the two days after the very first injection, but since then everything is tolerable and I haven't had any horrible side-effects.  I'm on week 9 of a high dose regime which goes down to a lower dose at 12 weeks.  Injections once a week.  Generally I'm slightly fatigued and short of breath and have lower energy than normal, but I can certainly function and go to work as usual.  I've had occasional headaches, dry mouth and am starting to get some itchy skin.  That's the full disclosure at this point.

                                                                    Good luck with your decision.  Definitely try it out and I hope that the side-effects are tolerable for you too!

                                                                    Elisa

                                                                    Jacqueline
                                                                    Participant

                                                                      It would be best to consult your son's medical oncologist.  I suggest following their recommendations.  With cancer, there is always uncertainty.  We never know how successful our treatment will be but we can always hope and have faith! I know that is not much reassurance but you have to trust your doctors and yourself to chose the correct treatment.  Good luck!

                                                                    Jacqueline
                                                                    Participant

                                                                      Hi ChristineL,

                                                                      I realize this reply is a little late but I was on a peg interferon trial in 2007. I was told that the symptoms are less severe than the standard dose…can't testify to that though! Good news is that I am still cancer free. I was at stage III when diagnosed. I had a total lymphandectomy in my right groin and pelvis.  7 lymph nodes were positive. I was only on interferon for one year and also had radiation.  But again, I am cancer free.  The treatment was a beast, however. I was in the first semester of my doctoral program when diagnosed.  I had to take time off to complete the treatment.  I was extremely fatigued, cold, could not drink anything with ice(everything was room temp), I lost my appetite and weight, and there were days that I was extremely achy…to the point of not wanting to be touched. However, these were not consistent symptoms.  I am just telling the worst. Overall, it was a necessary part of my treatment and most importantly I survived to tell the tale.

                                                                      Good luck in your treatment and best wishes for a cancer free existence!

                                                                      Jacqueline

                                                                      ezygoin686
                                                                      Participant

                                                                        I started the Peginterferon July 2011 after being diagnosed with stage IIIB malignant melanomia.  I have undergone two surgeries, one to remove the cancer and the other to remove nine lymph-nods under my right arm.

                                                                        On the Sylatron a/k/a Peginterferon I am experiencing major fatigue.  Tired, doesn't begin to desribe it.  Somedays I cannot hold my head up for long periods of time.  It usually lasts 4 days before I start to feel somewhat better. Then I usually get, maybe, one good day and  it's time for another injection and here we go again.

                                                                        I was told there is no cure for melanoma and that the Sylaton will only prolong my life.  However, I am beginning to wonder if it's worth it. 

                                                                        Other symptoms are depression, food tastes different or has no taste at all, small bumps or rash on my trunk area and they itch. Additionally, headaches and muscle pain and loss of muscle mass.

                                                                        ezygoin686
                                                                        Participant

                                                                          I started the Peginterferon July 2011 after being diagnosed with stage IIIB malignant melanomia.  I have undergone two surgeries, one to remove the cancer and the other to remove nine lymph-nods under my right arm.

                                                                          On the Sylatron a/k/a Peginterferon I am experiencing major fatigue.  Tired, doesn't begin to desribe it.  Somedays I cannot hold my head up for long periods of time.  It usually lasts 4 days before I start to feel somewhat better. Then I usually get, maybe, one good day and  it's time for another injection and here we go again.

                                                                          I was told there is no cure for melanoma and that the Sylaton will only prolong my life.  However, I am beginning to wonder if it's worth it. 

                                                                          Other symptoms are depression, food tastes different or has no taste at all, small bumps or rash on my trunk area and they itch. Additionally, headaches and muscle pain and loss of muscle mass.

                                                                          ezygoin686
                                                                          Participant

                                                                            I started the Peginterferon July 2011 after being diagnosed with stage IIIB malignant melanomia.  I have undergone two surgeries, one to remove the cancer and the other to remove nine lymph-nods under my right arm.

                                                                            On the Sylatron a/k/a Peginterferon I am experiencing major fatigue.  Tired, doesn't begin to desribe it.  Somedays I cannot hold my head up for long periods of time.  It usually lasts 4 days before I start to feel somewhat better. Then I usually get, maybe, one good day and  it's time for another injection and here we go again.

                                                                            I was told there is no cure for melanoma and that the Sylaton will only prolong my life.  However, I am beginning to wonder if it's worth it. 

                                                                            Other symptoms are depression, food tastes different or has no taste at all, small bumps or rash on my trunk area and they itch. Additionally, headaches and muscle pain and loss of muscle mass.

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