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Starting Interferon

Forums General Melanoma Community Starting Interferon

  • Post
    Jennycrn1
    Participant

      Forgive me–I looked back and didn't see this topic recently so I'm posting and looking for advice. I'm starting Interferon this week (Friday the 17th vs Monday the 20th). I'm looking for advice from anyone that has taken Interferon or is family of the Interferon taker…. How disruptive is it really to the day to day life? What real things can I do if I have bad symptoms to feel better?  What helps? What makes things worse? How soon after dosing would I start feeling bad? Can I drive myself alone back and forth to the appointments so my kids can stay home with a grandma? Should I dose in the mornig or afternoon? Sorry if I sound needy, but I'd like to hear from someone with real experience and not just the doc or nurse from the office with no personal experience. Thanks in advance, Jenny

    Viewing 38 reply threads
    • Replies
        jpg
        Participant

          Where are you going for treatment?  This is old drug highly toxic that doesn't work period.  You need to get better care.  Try one of these melanoma centers listed or just refuse to take it. http://melanomainternational.org/web-resources/cancer-centers 

            Jennycrn1
            Participant

              Please, I really am seeking advice, not criticism of my decision. I have been seen by two local Oncologists and also at three 'Melanoma Centers' by well known physicians since my diagnosis. I am stage 3b/3c depending on who interprets my path reports. I have persued clinical trials and am not 'eligible' by criteria. I was told most recently in Chicago that I should do NO treatment and just be vigilant with scans and exams every 3 months, and if I move to stage 4, "at least then you'll be eligible for the new drugs."  I am a nurse, I am well educated in drug adverse effects. I cannot sit back and do nothing while I move to metastatic disease when there is a drug with some change of benefit available that has many years of research re: benefits, toxicity, complications, etc.. while these new drugs need more time for better data and long term outcomes. I know there is little chance of stopping reccurance if I choose to wait. I need to do something so I don't regret waiting.

              I know Interferon is controversal, but I really would like advice, and I really hope I get some because I have seen many times on this site "Everyone has to make the best decision for themself". I will tolerate Interferon so I know I was trying something. This is the best I can do now.Thank you.

              Janner
              Participant

                There is tons of info in the archives.  The reason there are no recent posts is that it isn't a popular treatment anymore.  If you do some searching, you'll find what you want.

                Drink tons of water.  Shots at night.  Tylenol.  Some people have an easy time, some have a terrible time despite all efforts to control symptoms.  There is just no way to know ahead of time where you'll be on the scale.

                Janner
                Participant

                  There is tons of info in the archives.  The reason there are no recent posts is that it isn't a popular treatment anymore.  If you do some searching, you'll find what you want.

                  Drink tons of water.  Shots at night.  Tylenol.  Some people have an easy time, some have a terrible time despite all efforts to control symptoms.  There is just no way to know ahead of time where you'll be on the scale.

                  Janner
                  Participant

                    There is tons of info in the archives.  The reason there are no recent posts is that it isn't a popular treatment anymore.  If you do some searching, you'll find what you want.

                    Drink tons of water.  Shots at night.  Tylenol.  Some people have an easy time, some have a terrible time despite all efforts to control symptoms.  There is just no way to know ahead of time where you'll be on the scale.

                    jessica_f
                    Participant

                      Jenny, I'm in a similar boat and will offer up my experience. There are a lot of interferon critics, but in looking through the research studies, there is a slight benefit to taking it. Most people say that the toxicity isn't worth the slight benefit but I'll take any advantage, even if is minor.

                      I do believe that it was worth it for me to go on Interferon 14 years ago- I did high dose for a month and 9 months of low dose. I was, like you, a stage III. And I believe that along with dietary and lifestyle changes, it was one of the reasons that I had such a long remission.

                      I recently had a lung met appear, which was surgically removed, and followed up with a doc for a second opinion at one of the major cancer centers who said: "You have a 75-80% chance of recurrence, and unfortunately we don't have any treatment besides 3 month scans".

                      Waiting for further mets is not an option, and I'm thankful that my current onc will let me start Ipi, which like Interferon, is controversial with stage IV NED patients.

                      I believe that fighting metastatic cancer, even with a blunt instrument such as Interferon or adjuvant Ipi, is the right way to go, and fully support your decision. I will point out- and I'm sure that you've seen this as well- that studies seem to indicate that Interferon is only worthwhile in the intial high dose period, the low dose doesn't seem to do much.

                      My side effects with Interferon were high fevers and achiness for the high dose induction; over time with the low dose I generally felt hungover- fatigued, spacey, etc. I also had cocgnitive issues (short term memory issues which affected my ability to speak in long sentences and tell stories- would lose my train of thought easily. ; these are to a minor extent still wlth me today, but I started a graduate program at Berkeley several months after stopping Interferon and had no issues whatsoever).

                      That year of treating my cancer gave me time to reflect about my life, my choices, my happiness. I came out a stronger person than I was before, and don't regret my treatment decision for a moment. 

                      Wishing you the best of luck…

                      Jessica

                       

                      jessica_f
                      Participant

                        Jenny, I'm in a similar boat and will offer up my experience. There are a lot of interferon critics, but in looking through the research studies, there is a slight benefit to taking it. Most people say that the toxicity isn't worth the slight benefit but I'll take any advantage, even if is minor.

                        I do believe that it was worth it for me to go on Interferon 14 years ago- I did high dose for a month and 9 months of low dose. I was, like you, a stage III. And I believe that along with dietary and lifestyle changes, it was one of the reasons that I had such a long remission.

                        I recently had a lung met appear, which was surgically removed, and followed up with a doc for a second opinion at one of the major cancer centers who said: "You have a 75-80% chance of recurrence, and unfortunately we don't have any treatment besides 3 month scans".

                        Waiting for further mets is not an option, and I'm thankful that my current onc will let me start Ipi, which like Interferon, is controversial with stage IV NED patients.

                        I believe that fighting metastatic cancer, even with a blunt instrument such as Interferon or adjuvant Ipi, is the right way to go, and fully support your decision. I will point out- and I'm sure that you've seen this as well- that studies seem to indicate that Interferon is only worthwhile in the intial high dose period, the low dose doesn't seem to do much.

                        My side effects with Interferon were high fevers and achiness for the high dose induction; over time with the low dose I generally felt hungover- fatigued, spacey, etc. I also had cocgnitive issues (short term memory issues which affected my ability to speak in long sentences and tell stories- would lose my train of thought easily. ; these are to a minor extent still wlth me today, but I started a graduate program at Berkeley several months after stopping Interferon and had no issues whatsoever).

                        That year of treating my cancer gave me time to reflect about my life, my choices, my happiness. I came out a stronger person than I was before, and don't regret my treatment decision for a moment. 

                        Wishing you the best of luck…

                        Jessica

                         

                        jessica_f
                        Participant

                          Jenny, I'm in a similar boat and will offer up my experience. There are a lot of interferon critics, but in looking through the research studies, there is a slight benefit to taking it. Most people say that the toxicity isn't worth the slight benefit but I'll take any advantage, even if is minor.

                          I do believe that it was worth it for me to go on Interferon 14 years ago- I did high dose for a month and 9 months of low dose. I was, like you, a stage III. And I believe that along with dietary and lifestyle changes, it was one of the reasons that I had such a long remission.

                          I recently had a lung met appear, which was surgically removed, and followed up with a doc for a second opinion at one of the major cancer centers who said: "You have a 75-80% chance of recurrence, and unfortunately we don't have any treatment besides 3 month scans".

                          Waiting for further mets is not an option, and I'm thankful that my current onc will let me start Ipi, which like Interferon, is controversial with stage IV NED patients.

                          I believe that fighting metastatic cancer, even with a blunt instrument such as Interferon or adjuvant Ipi, is the right way to go, and fully support your decision. I will point out- and I'm sure that you've seen this as well- that studies seem to indicate that Interferon is only worthwhile in the intial high dose period, the low dose doesn't seem to do much.

                          My side effects with Interferon were high fevers and achiness for the high dose induction; over time with the low dose I generally felt hungover- fatigued, spacey, etc. I also had cocgnitive issues (short term memory issues which affected my ability to speak in long sentences and tell stories- would lose my train of thought easily. ; these are to a minor extent still wlth me today, but I started a graduate program at Berkeley several months after stopping Interferon and had no issues whatsoever).

                          That year of treating my cancer gave me time to reflect about my life, my choices, my happiness. I came out a stronger person than I was before, and don't regret my treatment decision for a moment. 

                          Wishing you the best of luck…

                          Jessica

                           

                          Jennycrn1
                          Participant

                            Please, I really am seeking advice, not criticism of my decision. I have been seen by two local Oncologists and also at three 'Melanoma Centers' by well known physicians since my diagnosis. I am stage 3b/3c depending on who interprets my path reports. I have persued clinical trials and am not 'eligible' by criteria. I was told most recently in Chicago that I should do NO treatment and just be vigilant with scans and exams every 3 months, and if I move to stage 4, "at least then you'll be eligible for the new drugs."  I am a nurse, I am well educated in drug adverse effects. I cannot sit back and do nothing while I move to metastatic disease when there is a drug with some change of benefit available that has many years of research re: benefits, toxicity, complications, etc.. while these new drugs need more time for better data and long term outcomes. I know there is little chance of stopping reccurance if I choose to wait. I need to do something so I don't regret waiting.

                            I know Interferon is controversal, but I really would like advice, and I really hope I get some because I have seen many times on this site "Everyone has to make the best decision for themself". I will tolerate Interferon so I know I was trying something. This is the best I can do now.Thank you.

                            Jennycrn1
                            Participant

                              Please, I really am seeking advice, not criticism of my decision. I have been seen by two local Oncologists and also at three 'Melanoma Centers' by well known physicians since my diagnosis. I am stage 3b/3c depending on who interprets my path reports. I have persued clinical trials and am not 'eligible' by criteria. I was told most recently in Chicago that I should do NO treatment and just be vigilant with scans and exams every 3 months, and if I move to stage 4, "at least then you'll be eligible for the new drugs."  I am a nurse, I am well educated in drug adverse effects. I cannot sit back and do nothing while I move to metastatic disease when there is a drug with some change of benefit available that has many years of research re: benefits, toxicity, complications, etc.. while these new drugs need more time for better data and long term outcomes. I know there is little chance of stopping reccurance if I choose to wait. I need to do something so I don't regret waiting.

                              I know Interferon is controversal, but I really would like advice, and I really hope I get some because I have seen many times on this site "Everyone has to make the best decision for themself". I will tolerate Interferon so I know I was trying something. This is the best I can do now.Thank you.

                              Ginger8888
                              Participant

                                This is the only way it would let me reply sorry..

                                 

                                I did the 30 day HD interferon and failed it..I am stage 3 C..Drink lot's and lot's of water, take ibuprofen and benedryl before each infusion and drink some nutritional drinks and V-8 Juice, talk to your dr about an antidepressent because this has very dangerous side effects..My dr told me to get rid of all the guns in my house..I went onto Yervoy (which is approved for a first line treatment now) and finished it Aug 13 2014 and have been and still am NED..Good luck

                                Ginger8888
                                Participant

                                  This is the only way it would let me reply sorry..

                                   

                                  I did the 30 day HD interferon and failed it..I am stage 3 C..Drink lot's and lot's of water, take ibuprofen and benedryl before each infusion and drink some nutritional drinks and V-8 Juice, talk to your dr about an antidepressent because this has very dangerous side effects..My dr told me to get rid of all the guns in my house..I went onto Yervoy (which is approved for a first line treatment now) and finished it Aug 13 2014 and have been and still am NED..Good luck

                                  Ginger8888
                                  Participant

                                    This is the only way it would let me reply sorry..

                                     

                                    I did the 30 day HD interferon and failed it..I am stage 3 C..Drink lot's and lot's of water, take ibuprofen and benedryl before each infusion and drink some nutritional drinks and V-8 Juice, talk to your dr about an antidepressent because this has very dangerous side effects..My dr told me to get rid of all the guns in my house..I went onto Yervoy (which is approved for a first line treatment now) and finished it Aug 13 2014 and have been and still am NED..Good luck

                                  jpg
                                  Participant

                                    Where are you going for treatment?  This is old drug highly toxic that doesn't work period.  You need to get better care.  Try one of these melanoma centers listed or just refuse to take it. http://melanomainternational.org/web-resources/cancer-centers 

                                    jpg
                                    Participant

                                      Where are you going for treatment?  This is old drug highly toxic that doesn't work period.  You need to get better care.  Try one of these melanoma centers listed or just refuse to take it. http://melanomainternational.org/web-resources/cancer-centers 

                                      mms7angels1
                                      Participant

                                        Hi Jenny

                                        I did high dose interferon in May 2008, 5 weekdays x 4weeks in a drs. treatment area. This was the only approved protocol at that time and I was seeing a local oncologist in MD.

                                        I would recommend you have someone drive you there and back. They premedicated me with anti nausea drugs and antihistamines, ibuprofen and  gave extra fluids (normal saline) in advance of the interferon. I was sleepy from the antihistamine during treatment. I had chills and night sweats and some mild to moderate headaches during the month of treatment. I experienced varying levels of fatigue, drank a lot of gatorade and ate smaller blander meals. The weekends between treatments I felt good enough to do light errands and attend family functions. I experienced mood swings and lots of anxiety and started Lexapro in October of 2008 and continue to take it. 

                                        I was on short term disability while undergoing the IV treatment. I then did 3 months of subq self administration but stopped that once I began seeing Dr. William Sharfman at Hopkins. Dr. Sharfman wasn't an advocate of interferon much less the subq treatments. I remained NED for almost 5 years. 

                                        Hope that helps and I send my prayers for a manageable experience and quick return to everyday living and joy of life!

                                        Maureen

                                        mms7angels1
                                        Participant

                                          Hi Jenny

                                          I did high dose interferon in May 2008, 5 weekdays x 4weeks in a drs. treatment area. This was the only approved protocol at that time and I was seeing a local oncologist in MD.

                                          I would recommend you have someone drive you there and back. They premedicated me with anti nausea drugs and antihistamines, ibuprofen and  gave extra fluids (normal saline) in advance of the interferon. I was sleepy from the antihistamine during treatment. I had chills and night sweats and some mild to moderate headaches during the month of treatment. I experienced varying levels of fatigue, drank a lot of gatorade and ate smaller blander meals. The weekends between treatments I felt good enough to do light errands and attend family functions. I experienced mood swings and lots of anxiety and started Lexapro in October of 2008 and continue to take it. 

                                          I was on short term disability while undergoing the IV treatment. I then did 3 months of subq self administration but stopped that once I began seeing Dr. William Sharfman at Hopkins. Dr. Sharfman wasn't an advocate of interferon much less the subq treatments. I remained NED for almost 5 years. 

                                          Hope that helps and I send my prayers for a manageable experience and quick return to everyday living and joy of life!

                                          Maureen

                                          mms7angels1
                                          Participant

                                            Hi Jenny

                                            I did high dose interferon in May 2008, 5 weekdays x 4weeks in a drs. treatment area. This was the only approved protocol at that time and I was seeing a local oncologist in MD.

                                            I would recommend you have someone drive you there and back. They premedicated me with anti nausea drugs and antihistamines, ibuprofen and  gave extra fluids (normal saline) in advance of the interferon. I was sleepy from the antihistamine during treatment. I had chills and night sweats and some mild to moderate headaches during the month of treatment. I experienced varying levels of fatigue, drank a lot of gatorade and ate smaller blander meals. The weekends between treatments I felt good enough to do light errands and attend family functions. I experienced mood swings and lots of anxiety and started Lexapro in October of 2008 and continue to take it. 

                                            I was on short term disability while undergoing the IV treatment. I then did 3 months of subq self administration but stopped that once I began seeing Dr. William Sharfman at Hopkins. Dr. Sharfman wasn't an advocate of interferon much less the subq treatments. I remained NED for almost 5 years. 

                                            Hope that helps and I send my prayers for a manageable experience and quick return to everyday living and joy of life!

                                            Maureen

                                            Fen
                                            Participant

                                              The problem with interferon, Jenny, is that its effects are so variable.  I had a miserable time – extreme fatigue and nausea to the point where I couldn't work but other people have posted that they had minimal side effects.  I haven't been able to indentify variables that might determine the outcome.  

                                              Even at my worst, though, I drove myself for the infusions – the chills and nausea started about an hour after the treatment.  During the low dose phase I gave myself shots at night and tried to sleep through the worst of it.  Drinking lots of water and short walks helped during the day.

                                              But I want to emphasize that others had much less severe side effects.  Might be age – I was in my 50s, attitude – not the perkiest flower in the boquet, or individual physiology.   In any case good luck!

                                              Fen

                                              Fen
                                              Participant

                                                The problem with interferon, Jenny, is that its effects are so variable.  I had a miserable time – extreme fatigue and nausea to the point where I couldn't work but other people have posted that they had minimal side effects.  I haven't been able to indentify variables that might determine the outcome.  

                                                Even at my worst, though, I drove myself for the infusions – the chills and nausea started about an hour after the treatment.  During the low dose phase I gave myself shots at night and tried to sleep through the worst of it.  Drinking lots of water and short walks helped during the day.

                                                But I want to emphasize that others had much less severe side effects.  Might be age – I was in my 50s, attitude – not the perkiest flower in the boquet, or individual physiology.   In any case good luck!

                                                Fen

                                                Fen
                                                Participant

                                                  The problem with interferon, Jenny, is that its effects are so variable.  I had a miserable time – extreme fatigue and nausea to the point where I couldn't work but other people have posted that they had minimal side effects.  I haven't been able to indentify variables that might determine the outcome.  

                                                  Even at my worst, though, I drove myself for the infusions – the chills and nausea started about an hour after the treatment.  During the low dose phase I gave myself shots at night and tried to sleep through the worst of it.  Drinking lots of water and short walks helped during the day.

                                                  But I want to emphasize that others had much less severe side effects.  Might be age – I was in my 50s, attitude – not the perkiest flower in the boquet, or individual physiology.   In any case good luck!

                                                  Fen

                                                  Toby0987
                                                  Participant

                                                    Your best bet is to cancel your appointment and fire the dr that advises you to take it. It doesn't work! Top melanoma specialists at md Anderson , mayo, Sloan Kettering don't have their melanoma patients take it that I know of-get a second opinion

                                                    Toby0987
                                                    Participant

                                                      Your best bet is to cancel your appointment and fire the dr that advises you to take it. It doesn't work! Top melanoma specialists at md Anderson , mayo, Sloan Kettering don't have their melanoma patients take it that I know of-get a second opinion

                                                      Toby0987
                                                      Participant

                                                        Your best bet is to cancel your appointment and fire the dr that advises you to take it. It doesn't work! Top melanoma specialists at md Anderson , mayo, Sloan Kettering don't have their melanoma patients take it that I know of-get a second opinion

                                                        RaquelP
                                                        Participant

                                                          Hi Jenny – my loved one never took interferon. It was his decision to watch and wait. It sounds like you have children and so I applaud your tenacity and drive. Either decision, whatever you choose, is the right decision for you. Surgery and frequent scans also takes drive and tenacity. Everyone's fight is their own, and I have yet to meet anyone with melanoma that had an easy battle, physically or emotionally.

                                                          There are posters on here that are against interferon, but I would encourage all to be sensitive. Not all qualify for clinical trials or the newer drugs. Clinical trials can be very difficult to qualify for, and for some, watch and wait is mentally not an option.

                                                          There are many that have benefited from interferon. Everyone reacts differently. Stay positive and focused and I wish you NED for decades to come!

                                                          RaquelP
                                                          Participant

                                                            Hi Jenny – my loved one never took interferon. It was his decision to watch and wait. It sounds like you have children and so I applaud your tenacity and drive. Either decision, whatever you choose, is the right decision for you. Surgery and frequent scans also takes drive and tenacity. Everyone's fight is their own, and I have yet to meet anyone with melanoma that had an easy battle, physically or emotionally.

                                                            There are posters on here that are against interferon, but I would encourage all to be sensitive. Not all qualify for clinical trials or the newer drugs. Clinical trials can be very difficult to qualify for, and for some, watch and wait is mentally not an option.

                                                            There are many that have benefited from interferon. Everyone reacts differently. Stay positive and focused and I wish you NED for decades to come!

                                                              Jennycrn1
                                                              Participant

                                                                Thank You!!

                                                                Jennycrn1
                                                                Participant

                                                                  Thank You!!

                                                                  jpg
                                                                  Participant

                                                                    People aren't against interferon, and it isn't controversial,  they are educated about it. It is only still give by those who are profit motivated.  It does not work, don't lose a year of your life for a drug that does nothing beneficial for you and does not by all scientific evidence extend your survival.  This is not being judgmental but instead trying to save you from misery when perhaps you still have a recurrence after taking it.  The best doctors don't prescribe it for anything anymore, not Hep. C  nothing.  It is toxic period.

                                                                     Work with your immune system, gets lots of exercise, eat healthy, take good care of your mind and body.  soon the newer meds will be out that might actually do something to prevent recur.

                                                                      Don't stick your head in the sand, ask your experts exactly what interferon does to prevent recurrence and extend your life.  You'll find they can't give you the studies that show that.

                                                                    jpg
                                                                    Participant

                                                                      People aren't against interferon, and it isn't controversial,  they are educated about it. It is only still give by those who are profit motivated.  It does not work, don't lose a year of your life for a drug that does nothing beneficial for you and does not by all scientific evidence extend your survival.  This is not being judgmental but instead trying to save you from misery when perhaps you still have a recurrence after taking it.  The best doctors don't prescribe it for anything anymore, not Hep. C  nothing.  It is toxic period.

                                                                       Work with your immune system, gets lots of exercise, eat healthy, take good care of your mind and body.  soon the newer meds will be out that might actually do something to prevent recur.

                                                                        Don't stick your head in the sand, ask your experts exactly what interferon does to prevent recurrence and extend your life.  You'll find they can't give you the studies that show that.

                                                                      jpg
                                                                      Participant

                                                                        People aren't against interferon, and it isn't controversial,  they are educated about it. It is only still give by those who are profit motivated.  It does not work, don't lose a year of your life for a drug that does nothing beneficial for you and does not by all scientific evidence extend your survival.  This is not being judgmental but instead trying to save you from misery when perhaps you still have a recurrence after taking it.  The best doctors don't prescribe it for anything anymore, not Hep. C  nothing.  It is toxic period.

                                                                         Work with your immune system, gets lots of exercise, eat healthy, take good care of your mind and body.  soon the newer meds will be out that might actually do something to prevent recur.

                                                                          Don't stick your head in the sand, ask your experts exactly what interferon does to prevent recurrence and extend your life.  You'll find they can't give you the studies that show that.

                                                                        [email protected]
                                                                        Participant

                                                                          I was dx stage 3 in June, 2000 with micromets in the sentinal node. I had a total node removal and then did the year treatment of Interferon. I continue to be NED (with NO issues ever) for 15 YEARS!!! So was it the node dissection, Interferon, was I just lucky? I really don't care which one it was but I would do NOTHING different if I had to do it over again!

                                                                          I'm all for looking for something better than Interferon if you can find it and it works for you. But I would ALWAYS recommend doing SOMETHING other than watch and wait!! Why people have to go out of their way to give unwanted advice when Jenny clearly said she only wanted support is beyond my wildest imagination. 

                                                                          As my mom always said, if you can't say anything nice, don't say anything at all!!

                                                                          Jenny, best of luck during your treatment. Now that you have  made your decision, stand behind it 110% and don't look back! I was able to drive myself to all my appointments but have to admit there were times I'm not sure how I made it home because I was so drowsy. I worked as much as I could during the high dose but it may not have been more than 5 hours a day. During the next 11 months, I typically put in @ 30 hours. I was able to keep up with the normal routines of my then 5 and 7 year old kids. 

                                                                          Good luck and take care!

                                                                          Cara

                                                                          [email protected]
                                                                          Participant

                                                                            I was dx stage 3 in June, 2000 with micromets in the sentinal node. I had a total node removal and then did the year treatment of Interferon. I continue to be NED (with NO issues ever) for 15 YEARS!!! So was it the node dissection, Interferon, was I just lucky? I really don't care which one it was but I would do NOTHING different if I had to do it over again!

                                                                            I'm all for looking for something better than Interferon if you can find it and it works for you. But I would ALWAYS recommend doing SOMETHING other than watch and wait!! Why people have to go out of their way to give unwanted advice when Jenny clearly said she only wanted support is beyond my wildest imagination. 

                                                                            As my mom always said, if you can't say anything nice, don't say anything at all!!

                                                                            Jenny, best of luck during your treatment. Now that you have  made your decision, stand behind it 110% and don't look back! I was able to drive myself to all my appointments but have to admit there were times I'm not sure how I made it home because I was so drowsy. I worked as much as I could during the high dose but it may not have been more than 5 hours a day. During the next 11 months, I typically put in @ 30 hours. I was able to keep up with the normal routines of my then 5 and 7 year old kids. 

                                                                            Good luck and take care!

                                                                            Cara

                                                                            [email protected]
                                                                            Participant

                                                                              I was dx stage 3 in June, 2000 with micromets in the sentinal node. I had a total node removal and then did the year treatment of Interferon. I continue to be NED (with NO issues ever) for 15 YEARS!!! So was it the node dissection, Interferon, was I just lucky? I really don't care which one it was but I would do NOTHING different if I had to do it over again!

                                                                              I'm all for looking for something better than Interferon if you can find it and it works for you. But I would ALWAYS recommend doing SOMETHING other than watch and wait!! Why people have to go out of their way to give unwanted advice when Jenny clearly said she only wanted support is beyond my wildest imagination. 

                                                                              As my mom always said, if you can't say anything nice, don't say anything at all!!

                                                                              Jenny, best of luck during your treatment. Now that you have  made your decision, stand behind it 110% and don't look back! I was able to drive myself to all my appointments but have to admit there were times I'm not sure how I made it home because I was so drowsy. I worked as much as I could during the high dose but it may not have been more than 5 hours a day. During the next 11 months, I typically put in @ 30 hours. I was able to keep up with the normal routines of my then 5 and 7 year old kids. 

                                                                              Good luck and take care!

                                                                              Cara

                                                                              Jennycrn1
                                                                              Participant

                                                                                Thank You!!

                                                                              RaquelP
                                                                              Participant

                                                                                Hi Jenny – my loved one never took interferon. It was his decision to watch and wait. It sounds like you have children and so I applaud your tenacity and drive. Either decision, whatever you choose, is the right decision for you. Surgery and frequent scans also takes drive and tenacity. Everyone's fight is their own, and I have yet to meet anyone with melanoma that had an easy battle, physically or emotionally.

                                                                                There are posters on here that are against interferon, but I would encourage all to be sensitive. Not all qualify for clinical trials or the newer drugs. Clinical trials can be very difficult to qualify for, and for some, watch and wait is mentally not an option.

                                                                                There are many that have benefited from interferon. Everyone reacts differently. Stay positive and focused and I wish you NED for decades to come!

                                                                                Prd10
                                                                                Participant

                                                                                  Hi Jenny,

                                                                                  Tough topic huh..  I did interferon 4 years ago in 2011.  I was 29 at the time with a 9 month old at home.  I was also seen in Chicago by a well respected expert and decided I had to give it a shot (no pun intended).  

                                                                                  Anyway, to answer your questions as others have noted it depends.  I would say the first month of infusions plan on having as much help as you can get.  I planned mine in the morning by choice, it takes a couple of hours so I figured I would get home in time for nap time for both of us.  Manage to spend a few hours together then back to bed together at 7 or 8pm.  In the first month I definitely slept 12-15 hrs a day and to be completely honest it was pretty rough.  At the time I also read that people would do it later in the day to try and sleep off the side effects, that would seem to work too but I didn't want to fight traffic and be in the car longer than necessary.  As far as driving yourself, I would plan to have someone drive you for the first few days to see how it goes.  The first day I didn't have any side effects for a few hours (I think this is typical), I thought I may have been in the clear and then all of a sudden I was very sick.  The first day was the worst.  The symptoms then seemed to kind of stick around until I had the reprieve of the weekend, but I was absolutely able to drive myself most days.  I felt like I needed to focus on something to take my attention away from how I was feeling and I had an hour + commute for every infusion.

                                                                                  Once you start the shots v infusions it's much more tolerable.  I only managed 3 months of shots but felt good about that and about being done!  I did the shots at night and just planned on early to bed.  I do wish I would have taken anti depressants prophylacticaly.  I didn't think I would need them at all and then I was in denial when I needed them.  I didn't have depression but crazy anxiety which I didn't even know to put a name to Bc I had never experience anything like it before.  

                                                                                  I can't say I'm glad I did it bc it was tough but I was confident in my decision at the time.  None of that matters bc it's only your decision to make.  I would at least encourage you to ask your oncologist if it may exclude you from trials should you need them.  I did end up recurring to 3C and couldn't get into an IPI trial bc of the prior interferon use.  It wasn't something I had even considered and it was upsetting.  Luckily I've been stable at 3C for 2 1/2 years. Things have been changing in the melanoma world quickly and for the better so we do have that on our side.  

                                                                                  good luck!

                                                                                  -Caitlin

                                                                                    jpg
                                                                                    Participant

                                                                                      Two more thoughts about long term effects of intron:  it does affect future fertility ability and you should not do if you have any depression in your life. It definitely can cause some permanent issues.

                                                                                      jpg
                                                                                      Participant

                                                                                        Two more thoughts about long term effects of intron:  it does affect future fertility ability and you should not do if you have any depression in your life. It definitely can cause some permanent issues.

                                                                                        jpg
                                                                                        Participant

                                                                                          Two more thoughts about long term effects of intron:  it does affect future fertility ability and you should not do if you have any depression in your life. It definitely can cause some permanent issues.

                                                                                        Prd10
                                                                                        Participant

                                                                                          Hi Jenny,

                                                                                          Tough topic huh..  I did interferon 4 years ago in 2011.  I was 29 at the time with a 9 month old at home.  I was also seen in Chicago by a well respected expert and decided I had to give it a shot (no pun intended).  

                                                                                          Anyway, to answer your questions as others have noted it depends.  I would say the first month of infusions plan on having as much help as you can get.  I planned mine in the morning by choice, it takes a couple of hours so I figured I would get home in time for nap time for both of us.  Manage to spend a few hours together then back to bed together at 7 or 8pm.  In the first month I definitely slept 12-15 hrs a day and to be completely honest it was pretty rough.  At the time I also read that people would do it later in the day to try and sleep off the side effects, that would seem to work too but I didn't want to fight traffic and be in the car longer than necessary.  As far as driving yourself, I would plan to have someone drive you for the first few days to see how it goes.  The first day I didn't have any side effects for a few hours (I think this is typical), I thought I may have been in the clear and then all of a sudden I was very sick.  The first day was the worst.  The symptoms then seemed to kind of stick around until I had the reprieve of the weekend, but I was absolutely able to drive myself most days.  I felt like I needed to focus on something to take my attention away from how I was feeling and I had an hour + commute for every infusion.

                                                                                          Once you start the shots v infusions it's much more tolerable.  I only managed 3 months of shots but felt good about that and about being done!  I did the shots at night and just planned on early to bed.  I do wish I would have taken anti depressants prophylacticaly.  I didn't think I would need them at all and then I was in denial when I needed them.  I didn't have depression but crazy anxiety which I didn't even know to put a name to Bc I had never experience anything like it before.  

                                                                                          I can't say I'm glad I did it bc it was tough but I was confident in my decision at the time.  None of that matters bc it's only your decision to make.  I would at least encourage you to ask your oncologist if it may exclude you from trials should you need them.  I did end up recurring to 3C and couldn't get into an IPI trial bc of the prior interferon use.  It wasn't something I had even considered and it was upsetting.  Luckily I've been stable at 3C for 2 1/2 years. Things have been changing in the melanoma world quickly and for the better so we do have that on our side.  

                                                                                          good luck!

                                                                                          -Caitlin

                                                                                          Prd10
                                                                                          Participant

                                                                                            Hi Jenny,

                                                                                            Tough topic huh..  I did interferon 4 years ago in 2011.  I was 29 at the time with a 9 month old at home.  I was also seen in Chicago by a well respected expert and decided I had to give it a shot (no pun intended).  

                                                                                            Anyway, to answer your questions as others have noted it depends.  I would say the first month of infusions plan on having as much help as you can get.  I planned mine in the morning by choice, it takes a couple of hours so I figured I would get home in time for nap time for both of us.  Manage to spend a few hours together then back to bed together at 7 or 8pm.  In the first month I definitely slept 12-15 hrs a day and to be completely honest it was pretty rough.  At the time I also read that people would do it later in the day to try and sleep off the side effects, that would seem to work too but I didn't want to fight traffic and be in the car longer than necessary.  As far as driving yourself, I would plan to have someone drive you for the first few days to see how it goes.  The first day I didn't have any side effects for a few hours (I think this is typical), I thought I may have been in the clear and then all of a sudden I was very sick.  The first day was the worst.  The symptoms then seemed to kind of stick around until I had the reprieve of the weekend, but I was absolutely able to drive myself most days.  I felt like I needed to focus on something to take my attention away from how I was feeling and I had an hour + commute for every infusion.

                                                                                            Once you start the shots v infusions it's much more tolerable.  I only managed 3 months of shots but felt good about that and about being done!  I did the shots at night and just planned on early to bed.  I do wish I would have taken anti depressants prophylacticaly.  I didn't think I would need them at all and then I was in denial when I needed them.  I didn't have depression but crazy anxiety which I didn't even know to put a name to Bc I had never experience anything like it before.  

                                                                                            I can't say I'm glad I did it bc it was tough but I was confident in my decision at the time.  None of that matters bc it's only your decision to make.  I would at least encourage you to ask your oncologist if it may exclude you from trials should you need them.  I did end up recurring to 3C and couldn't get into an IPI trial bc of the prior interferon use.  It wasn't something I had even considered and it was upsetting.  Luckily I've been stable at 3C for 2 1/2 years. Things have been changing in the melanoma world quickly and for the better so we do have that on our side.  

                                                                                            good luck!

                                                                                            -Caitlin

                                                                                            affguy
                                                                                            Participant
                                                                                              My dad tried interferon in 2012 using a somewhat different schedule than most. Rather than one month of high dose followed by eleven months of low dose, he did three months of high dose separated by two month intervals of no dosexception during which he felt well enough to work a part-time job delivering cars for a dealership. During his “on” months, he was incapable of much of anything, sleeping 14+ hours per day and feeling awful during his waking hours. He managed to ride 200 miles with my mom at one point, but was thenot too sick to leave his hotel room, thereby forcing him to miss my wedding. His experience was so unpleasant that he swore off any future treatment that could produce similar side effects.

                                                                                              He moved to Stage 4 about 6 months after completing his interferon regimen and started BRAF treatment which worked for about 14 months, but is now in hospice care.

                                                                                                pookerpb
                                                                                                Participant

                                                                                                  n

                                                                                                  pookerpb
                                                                                                  Participant

                                                                                                    n

                                                                                                    pookerpb
                                                                                                    Participant

                                                                                                      n

                                                                                                      pookerpb
                                                                                                      Participant

                                                                                                        I can only give you my opionion from a wifes standpoint when my husband did it. He was stage 2b in 2008. did the high dose for the 30 and did finish his shots for the whole year. He was 36 at the time and in great shape physically. He is a concrete contractor and work very manual labor intensive work.He was not the man I married that entire year. He had the  high fevers, chills, body aches, hair thninng. The worst part for he and I both were the mood swings. He was always aggrevated (due to feeling like crap), exhausted all the time. He I dont know how he worked but but he did….all year. God only knows how he did it. Once home from work though, he went straight to bed and my children and I basically didnt see him for the entire year. They were 6 and 8 at the time. Although I supported his choice for treatment, it was all that was available to him. We knew that recurrence was very high. He gave up a year of his life, but it made him think he was being proactive so that what got him though. I hated it, and although its easy for me to say as I dont have melanoma, I know without a doubt that with the odds of recurrence even after the interferon, I would not have done. I wouldnt have been able to enjoy my childrent or life that year.

                                                                                                        Fast forward, it came back in 2014 and he is stage IV and currently in a clinical trial.

                                                                                                        I rememver the eay he was diagnosed and I was secretly so upset that he may have to go on interferon again. His trial right now is Keytruda infusions every 3 weeks and peg interferon shot once a week. When we bother heard interpheron combo, we were both crying.  He opted to do but is still having so much trouble the toxicity of the peg interpheron. I secretly wish he would drop out of the trial and just stick with keytruda….its his choice though. Maybe the combo is the ticket….we will never know.

                                                                                                        Good luck you and I am sure you will make the best decision for you.

                                                                                                         

                                                                                                         

                                                                                                        pookerpb
                                                                                                        Participant

                                                                                                          I can only give you my opionion from a wifes standpoint when my husband did it. He was stage 2b in 2008. did the high dose for the 30 and did finish his shots for the whole year. He was 36 at the time and in great shape physically. He is a concrete contractor and work very manual labor intensive work.He was not the man I married that entire year. He had the  high fevers, chills, body aches, hair thninng. The worst part for he and I both were the mood swings. He was always aggrevated (due to feeling like crap), exhausted all the time. He I dont know how he worked but but he did….all year. God only knows how he did it. Once home from work though, he went straight to bed and my children and I basically didnt see him for the entire year. They were 6 and 8 at the time. Although I supported his choice for treatment, it was all that was available to him. We knew that recurrence was very high. He gave up a year of his life, but it made him think he was being proactive so that what got him though. I hated it, and although its easy for me to say as I dont have melanoma, I know without a doubt that with the odds of recurrence even after the interferon, I would not have done. I wouldnt have been able to enjoy my childrent or life that year.

                                                                                                          Fast forward, it came back in 2014 and he is stage IV and currently in a clinical trial.

                                                                                                          I rememver the eay he was diagnosed and I was secretly so upset that he may have to go on interferon again. His trial right now is Keytruda infusions every 3 weeks and peg interferon shot once a week. When we bother heard interpheron combo, we were both crying.  He opted to do but is still having so much trouble the toxicity of the peg interpheron. I secretly wish he would drop out of the trial and just stick with keytruda….its his choice though. Maybe the combo is the ticket….we will never know.

                                                                                                          Good luck you and I am sure you will make the best decision for you.

                                                                                                           

                                                                                                           

                                                                                                          pookerpb
                                                                                                          Participant

                                                                                                            I can only give you my opionion from a wifes standpoint when my husband did it. He was stage 2b in 2008. did the high dose for the 30 and did finish his shots for the whole year. He was 36 at the time and in great shape physically. He is a concrete contractor and work very manual labor intensive work.He was not the man I married that entire year. He had the  high fevers, chills, body aches, hair thninng. The worst part for he and I both were the mood swings. He was always aggrevated (due to feeling like crap), exhausted all the time. He I dont know how he worked but but he did….all year. God only knows how he did it. Once home from work though, he went straight to bed and my children and I basically didnt see him for the entire year. They were 6 and 8 at the time. Although I supported his choice for treatment, it was all that was available to him. We knew that recurrence was very high. He gave up a year of his life, but it made him think he was being proactive so that what got him though. I hated it, and although its easy for me to say as I dont have melanoma, I know without a doubt that with the odds of recurrence even after the interferon, I would not have done. I wouldnt have been able to enjoy my childrent or life that year.

                                                                                                            Fast forward, it came back in 2014 and he is stage IV and currently in a clinical trial.

                                                                                                            I rememver the eay he was diagnosed and I was secretly so upset that he may have to go on interferon again. His trial right now is Keytruda infusions every 3 weeks and peg interferon shot once a week. When we bother heard interpheron combo, we were both crying.  He opted to do but is still having so much trouble the toxicity of the peg interpheron. I secretly wish he would drop out of the trial and just stick with keytruda….its his choice though. Maybe the combo is the ticket….we will never know.

                                                                                                            Good luck you and I am sure you will make the best decision for you.

                                                                                                             

                                                                                                             

                                                                                                          affguy
                                                                                                          Participant
                                                                                                            My dad tried interferon in 2012 using a somewhat different schedule than most. Rather than one month of high dose followed by eleven months of low dose, he did three months of high dose separated by two month intervals of no dosexception during which he felt well enough to work a part-time job delivering cars for a dealership. During his “on” months, he was incapable of much of anything, sleeping 14+ hours per day and feeling awful during his waking hours. He managed to ride 200 miles with my mom at one point, but was thenot too sick to leave his hotel room, thereby forcing him to miss my wedding. His experience was so unpleasant that he swore off any future treatment that could produce similar side effects.

                                                                                                            He moved to Stage 4 about 6 months after completing his interferon regimen and started BRAF treatment which worked for about 14 months, but is now in hospice care.

                                                                                                            affguy
                                                                                                            Participant
                                                                                                              My dad tried interferon in 2012 using a somewhat different schedule than most. Rather than one month of high dose followed by eleven months of low dose, he did three months of high dose separated by two month intervals of no dosexception during which he felt well enough to work a part-time job delivering cars for a dealership. During his “on” months, he was incapable of much of anything, sleeping 14+ hours per day and feeling awful during his waking hours. He managed to ride 200 miles with my mom at one point, but was thenot too sick to leave his hotel room, thereby forcing him to miss my wedding. His experience was so unpleasant that he swore off any future treatment that could produce similar side effects.

                                                                                                              He moved to Stage 4 about 6 months after completing his interferon regimen and started BRAF treatment which worked for about 14 months, but is now in hospice care.

                                                                                                              jessica_f
                                                                                                              Participant

                                                                                                                By the way, just to further the point that I just posted above, I see many people who felt as though they "lost a year of their life" to interferon. I didn't have children at that point so I had more time to focus on wellness, but found that I grew so much as a person during that period. I didn't lose anything and I gained so much. It's all about perspective and adopting a positive attitude.

                                                                                                                A few years ago I started a food blog to share my healthy post-cancer attitude. And I wrote about my post cancer/interferon experience in this post:

                                                                                                                I do hope that helps. 

                                                                                                                jessica_f
                                                                                                                Participant

                                                                                                                  By the way, just to further the point that I just posted above, I see many people who felt as though they "lost a year of their life" to interferon. I didn't have children at that point so I had more time to focus on wellness, but found that I grew so much as a person during that period. I didn't lose anything and I gained so much. It's all about perspective and adopting a positive attitude.

                                                                                                                  A few years ago I started a food blog to share my healthy post-cancer attitude. And I wrote about my post cancer/interferon experience in this post:

                                                                                                                  I do hope that helps. 

                                                                                                                  jessica_f
                                                                                                                  Participant

                                                                                                                    By the way, just to further the point that I just posted above, I see many people who felt as though they "lost a year of their life" to interferon. I didn't have children at that point so I had more time to focus on wellness, but found that I grew so much as a person during that period. I didn't lose anything and I gained so much. It's all about perspective and adopting a positive attitude.

                                                                                                                    A few years ago I started a food blog to share my healthy post-cancer attitude. And I wrote about my post cancer/interferon experience in this post:

                                                                                                                    I do hope that helps. 

                                                                                                                      pookerpb
                                                                                                                      Participant

                                                                                                                        Wanted to add that my husband did drive himself back and forth to treatment each day….but it was only a 20 min drive for him. He would kind of keep the fevers under controls with alternating ibuprofen and tylenol.

                                                                                                                        He had extreme anxiety on it which he says was the worst part of it for him. Be sure to drink plenty of water. He had treatment with a young girls at the cancer center that had to come in once a week for IV hydration to keep her feeling better. She drank alot of water but wasnt enough I guess. Water, rest and a postive attitude is the key!!!

                                                                                                                         

                                                                                                                        pookerpb
                                                                                                                        Participant

                                                                                                                          Wanted to add that my husband did drive himself back and forth to treatment each day….but it was only a 20 min drive for him. He would kind of keep the fevers under controls with alternating ibuprofen and tylenol.

                                                                                                                          He had extreme anxiety on it which he says was the worst part of it for him. Be sure to drink plenty of water. He had treatment with a young girls at the cancer center that had to come in once a week for IV hydration to keep her feeling better. She drank alot of water but wasnt enough I guess. Water, rest and a postive attitude is the key!!!

                                                                                                                           

                                                                                                                          pookerpb
                                                                                                                          Participant

                                                                                                                            Wanted to add that my husband did drive himself back and forth to treatment each day….but it was only a 20 min drive for him. He would kind of keep the fevers under controls with alternating ibuprofen and tylenol.

                                                                                                                            He had extreme anxiety on it which he says was the worst part of it for him. Be sure to drink plenty of water. He had treatment with a young girls at the cancer center that had to come in once a week for IV hydration to keep her feeling better. She drank alot of water but wasnt enough I guess. Water, rest and a postive attitude is the key!!!

                                                                                                                             

                                                                                                                          bonusfries
                                                                                                                          Participant

                                                                                                                            Hi Jenny –

                                                                                                                            Yep tough crowd on this subject. Our feelings on taking Interferon are exactly the same – 2 years ago I could not sit around and do nothing but wait and watch. Did you choose the normal or pegolated version? I tried Peg, b/c once a week injections sounded much better than daily right? On average the side effects seem to increase on the pegolated version.

                                                                                                                            I only had acute side effects from the first two rounds of the high dose – fever, chills, aches – which would kick in 2-4 hours after injection. I took the dose after dinner, then loaded up on Tylenol and successfully slept through them. Mild fatigue and slight muscle aches were persistent. Is there an ability to have a nurse perform your dosing at home? Even if I had gone with the regular version, my onc said they would have it done in-home.

                                                                                                                            Unfortunately at the end of the high dose period I was lucky enough to start having unexplained mood swings which quickly ended my time on Interferon. Those were just temporary and stopped very quickly after going off the medication.

                                                                                                                            Good luck!

                                                                                                                            Jeff

                                                                                                                            bonusfries
                                                                                                                            Participant

                                                                                                                              Hi Jenny –

                                                                                                                              Yep tough crowd on this subject. Our feelings on taking Interferon are exactly the same – 2 years ago I could not sit around and do nothing but wait and watch. Did you choose the normal or pegolated version? I tried Peg, b/c once a week injections sounded much better than daily right? On average the side effects seem to increase on the pegolated version.

                                                                                                                              I only had acute side effects from the first two rounds of the high dose – fever, chills, aches – which would kick in 2-4 hours after injection. I took the dose after dinner, then loaded up on Tylenol and successfully slept through them. Mild fatigue and slight muscle aches were persistent. Is there an ability to have a nurse perform your dosing at home? Even if I had gone with the regular version, my onc said they would have it done in-home.

                                                                                                                              Unfortunately at the end of the high dose period I was lucky enough to start having unexplained mood swings which quickly ended my time on Interferon. Those were just temporary and stopped very quickly after going off the medication.

                                                                                                                              Good luck!

                                                                                                                              Jeff

                                                                                                                              bonusfries
                                                                                                                              Participant

                                                                                                                                Hi Jenny –

                                                                                                                                Yep tough crowd on this subject. Our feelings on taking Interferon are exactly the same – 2 years ago I could not sit around and do nothing but wait and watch. Did you choose the normal or pegolated version? I tried Peg, b/c once a week injections sounded much better than daily right? On average the side effects seem to increase on the pegolated version.

                                                                                                                                I only had acute side effects from the first two rounds of the high dose – fever, chills, aches – which would kick in 2-4 hours after injection. I took the dose after dinner, then loaded up on Tylenol and successfully slept through them. Mild fatigue and slight muscle aches were persistent. Is there an ability to have a nurse perform your dosing at home? Even if I had gone with the regular version, my onc said they would have it done in-home.

                                                                                                                                Unfortunately at the end of the high dose period I was lucky enough to start having unexplained mood swings which quickly ended my time on Interferon. Those were just temporary and stopped very quickly after going off the medication.

                                                                                                                                Good luck!

                                                                                                                                Jeff

                                                                                                                                michaelinsocal
                                                                                                                                Participant

                                                                                                                                  Hi Jenny, I'm Mike. I was diagnosed with melanoma on my outer left foot, just below the ankle bone. SNB was positive for micro traces, had left groin lymph nodes removed, all negative. 

                                                                                                                                  No trials were available to me. My only option was interferon. It came down do sitting and watching or doing interferon. I opted for interferon. Although it was a rough 12 months, I'm glad I was and continue to be as proactive about this as possible. 

                                                                                                                                  The first four weeks of high dosage was the worse. Fever, diarrhea, lost of appetite, and the general feeling of unwell. I lost 27 pounds in tree weeks. By the 4th week they ended the high dosage early due to my weight lost and gave me a two week break before doing the weekly maintenance (slytron). Shortly after ending the high dosage phase I was hit hard with axiety and depression. I forget what they gave me for the axiety (it's a well known drug) and Remeron for my depression. It took 2 weeks but I eventually balanced out. From there the most consistent side effect for me was diarrhea. I had it 3-4x a week. As the weeks progress all other side effects eased and improved. I completed my treatment late April of this year.

                                                                                                                                   

                                                                                                                                  Everything is watch and wait for me. Car scans every 6 months, between my dirigible oncologist, immune therapy oncologist and my dermologist I'm seen by someone nearly every month.

                                                                                                                                  according to my regular oncologist, I had it pretty easy compared to past patients. But I am a bit younger than most (42).

                                                                                                                                  i wish you the best of luck. Get through those first few weeks and you should be able to manage the rest. Believe it or not, I also worked around 32 hours a week during that stetch (minus the high dosage phase). You'll get through this.

                                                                                                                                  Be strong and fight on!

                                                                                                                                  Mike

                                                                                                                                    michaelinsocal
                                                                                                                                    Participant

                                                                                                                                      Just wanted to point out as some others already have, between interferon and work, I was very much exhausted. Some days I'd come home and sleep for twelve hours. The exhaustion gets better with time but expect to tire easily and to be easily aggravated. 

                                                                                                                                      Also, the advice Cara posted above is very true. She responsed to me when I had the same questions and provided helpful advice. Knowing that there are people out there that survive this disease is reassuring. Love your close ones and live your like to its fullness.

                                                                                                                                      michaelinsocal
                                                                                                                                      Participant

                                                                                                                                        Just wanted to point out as some others already have, between interferon and work, I was very much exhausted. Some days I'd come home and sleep for twelve hours. The exhaustion gets better with time but expect to tire easily and to be easily aggravated. 

                                                                                                                                        Also, the advice Cara posted above is very true. She responsed to me when I had the same questions and provided helpful advice. Knowing that there are people out there that survive this disease is reassuring. Love your close ones and live your like to its fullness.

                                                                                                                                        michaelinsocal
                                                                                                                                        Participant

                                                                                                                                          Just wanted to point out as some others already have, between interferon and work, I was very much exhausted. Some days I'd come home and sleep for twelve hours. The exhaustion gets better with time but expect to tire easily and to be easily aggravated. 

                                                                                                                                          Also, the advice Cara posted above is very true. She responsed to me when I had the same questions and provided helpful advice. Knowing that there are people out there that survive this disease is reassuring. Love your close ones and live your like to its fullness.

                                                                                                                                        michaelinsocal
                                                                                                                                        Participant

                                                                                                                                          Hi Jenny, I'm Mike. I was diagnosed with melanoma on my outer left foot, just below the ankle bone. SNB was positive for micro traces, had left groin lymph nodes removed, all negative. 

                                                                                                                                          No trials were available to me. My only option was interferon. It came down do sitting and watching or doing interferon. I opted for interferon. Although it was a rough 12 months, I'm glad I was and continue to be as proactive about this as possible. 

                                                                                                                                          The first four weeks of high dosage was the worse. Fever, diarrhea, lost of appetite, and the general feeling of unwell. I lost 27 pounds in tree weeks. By the 4th week they ended the high dosage early due to my weight lost and gave me a two week break before doing the weekly maintenance (slytron). Shortly after ending the high dosage phase I was hit hard with axiety and depression. I forget what they gave me for the axiety (it's a well known drug) and Remeron for my depression. It took 2 weeks but I eventually balanced out. From there the most consistent side effect for me was diarrhea. I had it 3-4x a week. As the weeks progress all other side effects eased and improved. I completed my treatment late April of this year.

                                                                                                                                           

                                                                                                                                          Everything is watch and wait for me. Car scans every 6 months, between my dirigible oncologist, immune therapy oncologist and my dermologist I'm seen by someone nearly every month.

                                                                                                                                          according to my regular oncologist, I had it pretty easy compared to past patients. But I am a bit younger than most (42).

                                                                                                                                          i wish you the best of luck. Get through those first few weeks and you should be able to manage the rest. Believe it or not, I also worked around 32 hours a week during that stetch (minus the high dosage phase). You'll get through this.

                                                                                                                                          Be strong and fight on!

                                                                                                                                          Mike

                                                                                                                                          michaelinsocal
                                                                                                                                          Participant

                                                                                                                                            Hi Jenny, I'm Mike. I was diagnosed with melanoma on my outer left foot, just below the ankle bone. SNB was positive for micro traces, had left groin lymph nodes removed, all negative. 

                                                                                                                                            No trials were available to me. My only option was interferon. It came down do sitting and watching or doing interferon. I opted for interferon. Although it was a rough 12 months, I'm glad I was and continue to be as proactive about this as possible. 

                                                                                                                                            The first four weeks of high dosage was the worse. Fever, diarrhea, lost of appetite, and the general feeling of unwell. I lost 27 pounds in tree weeks. By the 4th week they ended the high dosage early due to my weight lost and gave me a two week break before doing the weekly maintenance (slytron). Shortly after ending the high dosage phase I was hit hard with axiety and depression. I forget what they gave me for the axiety (it's a well known drug) and Remeron for my depression. It took 2 weeks but I eventually balanced out. From there the most consistent side effect for me was diarrhea. I had it 3-4x a week. As the weeks progress all other side effects eased and improved. I completed my treatment late April of this year.

                                                                                                                                             

                                                                                                                                            Everything is watch and wait for me. Car scans every 6 months, between my dirigible oncologist, immune therapy oncologist and my dermologist I'm seen by someone nearly every month.

                                                                                                                                            according to my regular oncologist, I had it pretty easy compared to past patients. But I am a bit younger than most (42).

                                                                                                                                            i wish you the best of luck. Get through those first few weeks and you should be able to manage the rest. Believe it or not, I also worked around 32 hours a week during that stetch (minus the high dosage phase). You'll get through this.

                                                                                                                                            Be strong and fight on!

                                                                                                                                            Mike

                                                                                                                                            mjanssentx
                                                                                                                                            Participant

                                                                                                                                              Jenny – I am in the exact same situation and have been on Interferon since January.  I don't know if there is any way to contact me directly via information via my profile…but I would happy to tell you exactly the Interferon experience and answer very specific questions.  (6 months more to go)

                                                                                                                                              For me, interferon has been an exhausting but doable process.  And the side effects are so predictable that I can almost write the script about exactly how I will feel 2-4-10-24-48 hours after each shot.  (same with the induction phase…but glad that hell only last 4 weeks)

                                                                                                                                              If you can send me some sort of private message I will send you a phone number for you to call directly.

                                                                                                                                              The only thought here in the big picture context…agree with those that say that you need a melanoma specialist for sure…and a big commentary…you need to become very educated about your options, get multiple opinions, and understand that the only one truly looking out for you is YOU.  (meaning don't rely solely on the healthcare profession)

                                                                                                                                              Michel

                                                                                                                                              mjanssentx
                                                                                                                                              Participant

                                                                                                                                                Jenny – I am in the exact same situation and have been on Interferon since January.  I don't know if there is any way to contact me directly via information via my profile…but I would happy to tell you exactly the Interferon experience and answer very specific questions.  (6 months more to go)

                                                                                                                                                For me, interferon has been an exhausting but doable process.  And the side effects are so predictable that I can almost write the script about exactly how I will feel 2-4-10-24-48 hours after each shot.  (same with the induction phase…but glad that hell only last 4 weeks)

                                                                                                                                                If you can send me some sort of private message I will send you a phone number for you to call directly.

                                                                                                                                                The only thought here in the big picture context…agree with those that say that you need a melanoma specialist for sure…and a big commentary…you need to become very educated about your options, get multiple opinions, and understand that the only one truly looking out for you is YOU.  (meaning don't rely solely on the healthcare profession)

                                                                                                                                                Michel

                                                                                                                                                mjanssentx
                                                                                                                                                Participant

                                                                                                                                                  Jenny – I am in the exact same situation and have been on Interferon since January.  I don't know if there is any way to contact me directly via information via my profile…but I would happy to tell you exactly the Interferon experience and answer very specific questions.  (6 months more to go)

                                                                                                                                                  For me, interferon has been an exhausting but doable process.  And the side effects are so predictable that I can almost write the script about exactly how I will feel 2-4-10-24-48 hours after each shot.  (same with the induction phase…but glad that hell only last 4 weeks)

                                                                                                                                                  If you can send me some sort of private message I will send you a phone number for you to call directly.

                                                                                                                                                  The only thought here in the big picture context…agree with those that say that you need a melanoma specialist for sure…and a big commentary…you need to become very educated about your options, get multiple opinions, and understand that the only one truly looking out for you is YOU.  (meaning don't rely solely on the healthcare profession)

                                                                                                                                                  Michel

                                                                                                                                                  Squash
                                                                                                                                                  Participant

                                                                                                                                                    I dont understnad how anyone can advocate or endorse doing interferon when the clinical research shows it offers no benefit and is highly toxic.

                                                                                                                                                    Arguments like i would rather do it than sit aroud doing nothing are silly in the extreme.

                                                                                                                                                    There are plenty of things you can do by improving yor diet lifesyle etc.

                                                                                                                                                    Many on this board dismiss alternative therapies as lacking in any clinical evidence and whilst that may be true at least in most cases they dont cause any outright harm or toxicity.

                                                                                                                                                    Dont let desperation get in the way of the hard cold facts.

                                                                                                                                                    Enjoy your life and dont destroy the qyality of yoru life for an umproven tosic treatment.

                                                                                                                                                     

                                                                                                                                                     

                                                                                                                                                     

                                                                                                                                                    Squash
                                                                                                                                                    Participant

                                                                                                                                                      I dont understnad how anyone can advocate or endorse doing interferon when the clinical research shows it offers no benefit and is highly toxic.

                                                                                                                                                      Arguments like i would rather do it than sit aroud doing nothing are silly in the extreme.

                                                                                                                                                      There are plenty of things you can do by improving yor diet lifesyle etc.

                                                                                                                                                      Many on this board dismiss alternative therapies as lacking in any clinical evidence and whilst that may be true at least in most cases they dont cause any outright harm or toxicity.

                                                                                                                                                      Dont let desperation get in the way of the hard cold facts.

                                                                                                                                                      Enjoy your life and dont destroy the qyality of yoru life for an umproven tosic treatment.

                                                                                                                                                       

                                                                                                                                                       

                                                                                                                                                       

                                                                                                                                                        mjanssentx
                                                                                                                                                        Participant

                                                                                                                                                          There is clear evidence that Interferon does have benefits for 3A patients.  While the overall survival rate improvement is just a few percent…it is something.  (so my 5 year survival rate goes from 78% to something a few percentage points higher)

                                                                                                                                                          But more important to my decision, was the clear statistical benefit of keeping Melanoma at bay for an average of 6-8 months over those doing nothing.  I went to 3 different oncologists that specialized in Melanoma and each one of them recommended the treatment for 3A patients (there was a trial starting that might be interesting but I was too early from date of surgury to participate)

                                                                                                                                                          In today's rapidly changing melanoma treatment options…I voted for 6-8 extra statistical months with the option to be around for new treatments as they become available. (if I am in the 30% reoccurance group) 

                                                                                                                                                          Each person has to make their own decision…best to all.

                                                                                                                                                          Michel

                                                                                                                                                          mjanssentx
                                                                                                                                                          Participant

                                                                                                                                                            There is clear evidence that Interferon does have benefits for 3A patients.  While the overall survival rate improvement is just a few percent…it is something.  (so my 5 year survival rate goes from 78% to something a few percentage points higher)

                                                                                                                                                            But more important to my decision, was the clear statistical benefit of keeping Melanoma at bay for an average of 6-8 months over those doing nothing.  I went to 3 different oncologists that specialized in Melanoma and each one of them recommended the treatment for 3A patients (there was a trial starting that might be interesting but I was too early from date of surgury to participate)

                                                                                                                                                            In today's rapidly changing melanoma treatment options…I voted for 6-8 extra statistical months with the option to be around for new treatments as they become available. (if I am in the 30% reoccurance group) 

                                                                                                                                                            Each person has to make their own decision…best to all.

                                                                                                                                                            Michel

                                                                                                                                                            jpg
                                                                                                                                                            Participant

                                                                                                                                                              Your research is faulty and your specialists aren't.  People come from alll over the world to Sloan Kettering and they stopped prescribing interferon 20 years ago!   There is no survival or even delay in recurrence with interferon.  It is old and toxic period.  Pharma is still trying to make money off it with a few docs here and there.

                                                                                                                                                              jpg
                                                                                                                                                              Participant

                                                                                                                                                                Your research is faulty and your specialists aren't.  People come from alll over the world to Sloan Kettering and they stopped prescribing interferon 20 years ago!   There is no survival or even delay in recurrence with interferon.  It is old and toxic period.  Pharma is still trying to make money off it with a few docs here and there.

                                                                                                                                                                jpg
                                                                                                                                                                Participant

                                                                                                                                                                  Your research is faulty and your specialists aren't.  People come from alll over the world to Sloan Kettering and they stopped prescribing interferon 20 years ago!   There is no survival or even delay in recurrence with interferon.  It is old and toxic period.  Pharma is still trying to make money off it with a few docs here and there.

                                                                                                                                                                  mjanssentx
                                                                                                                                                                  Participant

                                                                                                                                                                    There is clear evidence that Interferon does have benefits for 3A patients.  While the overall survival rate improvement is just a few percent…it is something.  (so my 5 year survival rate goes from 78% to something a few percentage points higher)

                                                                                                                                                                    But more important to my decision, was the clear statistical benefit of keeping Melanoma at bay for an average of 6-8 months over those doing nothing.  I went to 3 different oncologists that specialized in Melanoma and each one of them recommended the treatment for 3A patients (there was a trial starting that might be interesting but I was too early from date of surgury to participate)

                                                                                                                                                                    In today's rapidly changing melanoma treatment options…I voted for 6-8 extra statistical months with the option to be around for new treatments as they become available. (if I am in the 30% reoccurance group) 

                                                                                                                                                                    Each person has to make their own decision…best to all.

                                                                                                                                                                    Michel

                                                                                                                                                                  Squash
                                                                                                                                                                  Participant

                                                                                                                                                                    I dont understnad how anyone can advocate or endorse doing interferon when the clinical research shows it offers no benefit and is highly toxic.

                                                                                                                                                                    Arguments like i would rather do it than sit aroud doing nothing are silly in the extreme.

                                                                                                                                                                    There are plenty of things you can do by improving yor diet lifesyle etc.

                                                                                                                                                                    Many on this board dismiss alternative therapies as lacking in any clinical evidence and whilst that may be true at least in most cases they dont cause any outright harm or toxicity.

                                                                                                                                                                    Dont let desperation get in the way of the hard cold facts.

                                                                                                                                                                    Enjoy your life and dont destroy the qyality of yoru life for an umproven tosic treatment.

                                                                                                                                                                     

                                                                                                                                                                     

                                                                                                                                                                     

                                                                                                                                                                    amelanomajourney
                                                                                                                                                                    Participant

                                                                                                                                                                      Hey Jenny, this is a big decision to make wIth so many different variables that come into play for each individual.  On my blog I talk a bit about what a year of interferon was like for me and why I chose it.  I will say that the choice is yours and dependent on your current access to trials, financial resources, country and support system. 

                                                                                                                                                                      I will answer a few of your questions – it is massively disruptive to life.  Make no plans for the day – anything you accomplish is a success.  Figure out when you will have good days and live around those.  Tylenol, sleep, water and light exercise help.  I would try to have a friend or family member drive you.  You should dose as close to bed time as possible.

                                                                                                                                                                      My thoughts are with you – this isn't easy!

                                                                                                                                                                       
                                                                                                                                                                      amelanomajourney
                                                                                                                                                                      Participant

                                                                                                                                                                        Hey Jenny, this is a big decision to make wIth so many different variables that come into play for each individual.  On my blog I talk a bit about what a year of interferon was like for me and why I chose it.  I will say that the choice is yours and dependent on your current access to trials, financial resources, country and support system. 

                                                                                                                                                                        I will answer a few of your questions – it is massively disruptive to life.  Make no plans for the day – anything you accomplish is a success.  Figure out when you will have good days and live around those.  Tylenol, sleep, water and light exercise help.  I would try to have a friend or family member drive you.  You should dose as close to bed time as possible.

                                                                                                                                                                        My thoughts are with you – this isn't easy!

                                                                                                                                                                         
                                                                                                                                                                        amelanomajourney
                                                                                                                                                                        Participant

                                                                                                                                                                          Hey Jenny, this is a big decision to make wIth so many different variables that come into play for each individual.  On my blog I talk a bit about what a year of interferon was like for me and why I chose it.  I will say that the choice is yours and dependent on your current access to trials, financial resources, country and support system. 

                                                                                                                                                                          I will answer a few of your questions – it is massively disruptive to life.  Make no plans for the day – anything you accomplish is a success.  Figure out when you will have good days and live around those.  Tylenol, sleep, water and light exercise help.  I would try to have a friend or family member drive you.  You should dose as close to bed time as possible.

                                                                                                                                                                          My thoughts are with you – this isn't easy!

                                                                                                                                                                           
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                                                                                                                                                                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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