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What are the side effects of Interferon Alpha-26?

Forums General Melanoma Community What are the side effects of Interferon Alpha-26?

  • Post
    WallyE
    Participant

      Good morning all and a very happy new year to you all.

      I have posted under various topics in the past but I now need new advice, which will get lost if posted on a previous topic.

      I am due to commence with the subject treatnment within the next week or so. Just waiting for my Medical Aid to authorise it.

      I have googled the treatment but it seems to be quite intimidating.

      I would like to know if anyone who has had this treatment can spare a moment and tell me what they experienced and whether or not it is as bad as they say. As it is I am having quite a hard time adjusting to being without a stomach in terms of nausea etc so not sure if I can handel another load of the same discomfort.

      Any input will be greatly appreciated.

      Kind regards

      Wally

    Viewing 11 reply threads
    • Replies
        mjanssentx
        Participant

          Wally – a couple of questions before I try to answer your question.  

          Did you have a typo in the headline when you said Interferon Alpha 26…the approved protocol for many years was Interferon Alpha 2B?  ( googled the Alpha 26 and couldn't find any related treatment.)

          And based upon your previous posts are you not an advanced Stage 4 patient?

          If my assumptions are correct…then Interferon Alpha 2B is absolutely NOT the right treatment plan based upon what I know.  You need the new drugs like Yervoy or Keytruda (and several other similar alternatives). Now having said that before I call your doctors idiots…they may be avoiding those because of your stomach surgeries so did they discuss those new alternatives with you and your specific risks?

          I just finished a full year of Interferon Alpha 2B treatments 2 weeks ago and will be happy to answer your questions about side effects….(my situation was Adjunctive for 3A) but wanted to be sure we are talking about the drug that I have just finished and not something else.

          Here's to a healthier New Year for all of us….Michel

           

           

           

          mjanssentx
          Participant

            Wally – a couple of questions before I try to answer your question.  

            Did you have a typo in the headline when you said Interferon Alpha 26…the approved protocol for many years was Interferon Alpha 2B?  ( googled the Alpha 26 and couldn't find any related treatment.)

            And based upon your previous posts are you not an advanced Stage 4 patient?

            If my assumptions are correct…then Interferon Alpha 2B is absolutely NOT the right treatment plan based upon what I know.  You need the new drugs like Yervoy or Keytruda (and several other similar alternatives). Now having said that before I call your doctors idiots…they may be avoiding those because of your stomach surgeries so did they discuss those new alternatives with you and your specific risks?

            I just finished a full year of Interferon Alpha 2B treatments 2 weeks ago and will be happy to answer your questions about side effects….(my situation was Adjunctive for 3A) but wanted to be sure we are talking about the drug that I have just finished and not something else.

            Here's to a healthier New Year for all of us….Michel

             

             

             

              WallyE
              Participant

                Hi Michel, thank you so much for responding. I am at my wits end at the moment.

                Apologies, yes Alpha B. I am advanced stage 4.

                Apparently I do not qualify for clinical trials as my BRAF Mutation (whatever that is) is not correct / compatible?

                The alternatives were not discussed with me. All I was told is that because the cancer cells are now in my bloodstream, the best approach would be the Interferon Alpha 2B

                I await your response with interest as I will have to have some serious discussion with my oncologist.

                Once again thanks and kind regards

                Wally

                Linny
                Participant

                  Hi Wally,

                  This is puzzling. If you are Stage IV, I am surprised that you are being offered Interferon. Are you being seen by a melanoma specialist? Have you asked your doctor about Nivolumab or Keytruda? While there are side effects to deal with even with those two drugs, neither one is as toxic as Interferon. Statistics are for Stage IV folks using these drugs have been pretty impressive. Jimmy Carter is now in remission thanks to Keytruda.

                  Linny
                  Participant

                    Hi Wally,

                    This is puzzling. If you are Stage IV, I am surprised that you are being offered Interferon. Are you being seen by a melanoma specialist? Have you asked your doctor about Nivolumab or Keytruda? While there are side effects to deal with even with those two drugs, neither one is as toxic as Interferon. Statistics are for Stage IV folks using these drugs have been pretty impressive. Jimmy Carter is now in remission thanks to Keytruda.

                    Linny
                    Participant

                      Hi Wally,

                      This is puzzling. If you are Stage IV, I am surprised that you are being offered Interferon. Are you being seen by a melanoma specialist? Have you asked your doctor about Nivolumab or Keytruda? While there are side effects to deal with even with those two drugs, neither one is as toxic as Interferon. Statistics are for Stage IV folks using these drugs have been pretty impressive. Jimmy Carter is now in remission thanks to Keytruda.

                      WallyE
                      Participant

                        Hi Michel, thank you so much for responding. I am at my wits end at the moment.

                        Apologies, yes Alpha B. I am advanced stage 4.

                        Apparently I do not qualify for clinical trials as my BRAF Mutation (whatever that is) is not correct / compatible?

                        The alternatives were not discussed with me. All I was told is that because the cancer cells are now in my bloodstream, the best approach would be the Interferon Alpha 2B

                        I await your response with interest as I will have to have some serious discussion with my oncologist.

                        Once again thanks and kind regards

                        Wally

                        WallyE
                        Participant

                          Hi Michel, thank you so much for responding. I am at my wits end at the moment.

                          Apologies, yes Alpha B. I am advanced stage 4.

                          Apparently I do not qualify for clinical trials as my BRAF Mutation (whatever that is) is not correct / compatible?

                          The alternatives were not discussed with me. All I was told is that because the cancer cells are now in my bloodstream, the best approach would be the Interferon Alpha 2B

                          I await your response with interest as I will have to have some serious discussion with my oncologist.

                          Once again thanks and kind regards

                          Wally

                        mjanssentx
                        Participant

                          Wally – a couple of questions before I try to answer your question.  

                          Did you have a typo in the headline when you said Interferon Alpha 26…the approved protocol for many years was Interferon Alpha 2B?  ( googled the Alpha 26 and couldn't find any related treatment.)

                          And based upon your previous posts are you not an advanced Stage 4 patient?

                          If my assumptions are correct…then Interferon Alpha 2B is absolutely NOT the right treatment plan based upon what I know.  You need the new drugs like Yervoy or Keytruda (and several other similar alternatives). Now having said that before I call your doctors idiots…they may be avoiding those because of your stomach surgeries so did they discuss those new alternatives with you and your specific risks?

                          I just finished a full year of Interferon Alpha 2B treatments 2 weeks ago and will be happy to answer your questions about side effects….(my situation was Adjunctive for 3A) but wanted to be sure we are talking about the drug that I have just finished and not something else.

                          Here's to a healthier New Year for all of us….Michel

                           

                           

                           

                          mjanssentx
                          Participant

                            Wally – so let's start with the bottom line first…would I do Interferon for your situation (without completely understanding the implication of the stomach location)…NO WAY.  I am a stage 3A and was looking for adjunctive therapy (prevention more than cure).  In 2014, Interferon was the only real viable alternative for 3A.  The main benefit was to delay reoccurrence by 6-12 months…it is not a cure by any imagination….but I am currently NED so I am thinking it was the worth the effort.

                            But let me answer your question directly.

                            The normal delivery in month 1 is 40 units done via IV at the clinic (4 weeks x 5 days).  I made 19 of the 20 IVs that were prescribed but let me tell you it was a real challenge.  The worst is the first 3-5 days where I experienced high fever (103), body aches, shakes, lost appetite (total of probably 20 different symptoms).  But over the course of the month the violent nature of the first week subsided and then the real issue became fatigue.  (I still worked about 35 hours a week from home…the rest of the time was at the clinic and sleeping)  i would say my body strength was down to 40-50% by month end barely able to walk into the clinic.

                            Once you finish that they will give your body 2 weeks to recover and then you start the home shots at 20 units 3 times per week.  The best way to describe it as "Super Blah days", "Blah days", and depending on the timing I typical got to have a "not so Blah day" once per week.  My wife administered the shots which were not fun but really not a big deal in the scheme of things.

                            So here is what I experienced for those 11 months.

                            Shot at 7:30 PM…started feeling it at about 8:30 PM (take with Tylenol) as I went to bed.  Was able to sleep until sometime around 1-3 AM when the fever began to spike (only about 100-101 most shots).  Really restless sleeping until about 6:00 AM when fever was typically down to 99-100.  At that point energy level is probably 60-70%…but you will recover to 70-80% by mid-day.  Appetite is down and generally you feel crappy but you can function.  I worked from home and then traveled about 1-2 times per month for 2-3 days per week.  I timed my shots and trips so that nobody saw me on Super Blah days and occasional I had work from bed days.  I often would skip a shot (maybe 1-2 per month) if I had to make a 3 day trip.

                            A couple of other thoughts….I took drug holidays (which my doctor recommended) which required me to stop the drug 6-7 days before a beach vacation (so not too much activity).  By day 7-8 my appetite was back and I was back to almost 85-90% and by day 10 that I was feeling really good and eating, drinking, and having fairly active fun again.   The bad news is that when you come back home after 14 total days off of the shots…you are going to hate that night…back to 103 fever, real body shakes followed by a Super Super Blah day.

                            Sometime about 2/3rds of the way through the year, I reduced my shots to 15 units (so by about 25% of full strength) and that really helped on the depth of the Super Blah days.

                            So my net…you can do Interferon with a bit of common sense management.

                            Now back to "should you even do this"….I would really make sure you take a serious look at all of the new drugs that became available over the past year.  For stage 4 patients you have so many better choices than Interferon….but your specific situation may prevent you from taking them.  BUT ABSOLUTELY MAKE SURE YOU ARE TALKING TO A MELANOMA specialist…not just an oncologist.

                            Feel free to message me directly…and I can answer any additional questions you might have about managing the side effects if you do the Interferon path.

                            Best wishes….Michel

                            mjanssentx
                            Participant

                              Wally – so let's start with the bottom line first…would I do Interferon for your situation (without completely understanding the implication of the stomach location)…NO WAY.  I am a stage 3A and was looking for adjunctive therapy (prevention more than cure).  In 2014, Interferon was the only real viable alternative for 3A.  The main benefit was to delay reoccurrence by 6-12 months…it is not a cure by any imagination….but I am currently NED so I am thinking it was the worth the effort.

                              But let me answer your question directly.

                              The normal delivery in month 1 is 40 units done via IV at the clinic (4 weeks x 5 days).  I made 19 of the 20 IVs that were prescribed but let me tell you it was a real challenge.  The worst is the first 3-5 days where I experienced high fever (103), body aches, shakes, lost appetite (total of probably 20 different symptoms).  But over the course of the month the violent nature of the first week subsided and then the real issue became fatigue.  (I still worked about 35 hours a week from home…the rest of the time was at the clinic and sleeping)  i would say my body strength was down to 40-50% by month end barely able to walk into the clinic.

                              Once you finish that they will give your body 2 weeks to recover and then you start the home shots at 20 units 3 times per week.  The best way to describe it as "Super Blah days", "Blah days", and depending on the timing I typical got to have a "not so Blah day" once per week.  My wife administered the shots which were not fun but really not a big deal in the scheme of things.

                              So here is what I experienced for those 11 months.

                              Shot at 7:30 PM…started feeling it at about 8:30 PM (take with Tylenol) as I went to bed.  Was able to sleep until sometime around 1-3 AM when the fever began to spike (only about 100-101 most shots).  Really restless sleeping until about 6:00 AM when fever was typically down to 99-100.  At that point energy level is probably 60-70%…but you will recover to 70-80% by mid-day.  Appetite is down and generally you feel crappy but you can function.  I worked from home and then traveled about 1-2 times per month for 2-3 days per week.  I timed my shots and trips so that nobody saw me on Super Blah days and occasional I had work from bed days.  I often would skip a shot (maybe 1-2 per month) if I had to make a 3 day trip.

                              A couple of other thoughts….I took drug holidays (which my doctor recommended) which required me to stop the drug 6-7 days before a beach vacation (so not too much activity).  By day 7-8 my appetite was back and I was back to almost 85-90% and by day 10 that I was feeling really good and eating, drinking, and having fairly active fun again.   The bad news is that when you come back home after 14 total days off of the shots…you are going to hate that night…back to 103 fever, real body shakes followed by a Super Super Blah day.

                              Sometime about 2/3rds of the way through the year, I reduced my shots to 15 units (so by about 25% of full strength) and that really helped on the depth of the Super Blah days.

                              So my net…you can do Interferon with a bit of common sense management.

                              Now back to "should you even do this"….I would really make sure you take a serious look at all of the new drugs that became available over the past year.  For stage 4 patients you have so many better choices than Interferon….but your specific situation may prevent you from taking them.  BUT ABSOLUTELY MAKE SURE YOU ARE TALKING TO A MELANOMA specialist…not just an oncologist.

                              Feel free to message me directly…and I can answer any additional questions you might have about managing the side effects if you do the Interferon path.

                              Best wishes….Michel

                              mjanssentx
                              Participant

                                Wally – so let's start with the bottom line first…would I do Interferon for your situation (without completely understanding the implication of the stomach location)…NO WAY.  I am a stage 3A and was looking for adjunctive therapy (prevention more than cure).  In 2014, Interferon was the only real viable alternative for 3A.  The main benefit was to delay reoccurrence by 6-12 months…it is not a cure by any imagination….but I am currently NED so I am thinking it was the worth the effort.

                                But let me answer your question directly.

                                The normal delivery in month 1 is 40 units done via IV at the clinic (4 weeks x 5 days).  I made 19 of the 20 IVs that were prescribed but let me tell you it was a real challenge.  The worst is the first 3-5 days where I experienced high fever (103), body aches, shakes, lost appetite (total of probably 20 different symptoms).  But over the course of the month the violent nature of the first week subsided and then the real issue became fatigue.  (I still worked about 35 hours a week from home…the rest of the time was at the clinic and sleeping)  i would say my body strength was down to 40-50% by month end barely able to walk into the clinic.

                                Once you finish that they will give your body 2 weeks to recover and then you start the home shots at 20 units 3 times per week.  The best way to describe it as "Super Blah days", "Blah days", and depending on the timing I typical got to have a "not so Blah day" once per week.  My wife administered the shots which were not fun but really not a big deal in the scheme of things.

                                So here is what I experienced for those 11 months.

                                Shot at 7:30 PM…started feeling it at about 8:30 PM (take with Tylenol) as I went to bed.  Was able to sleep until sometime around 1-3 AM when the fever began to spike (only about 100-101 most shots).  Really restless sleeping until about 6:00 AM when fever was typically down to 99-100.  At that point energy level is probably 60-70%…but you will recover to 70-80% by mid-day.  Appetite is down and generally you feel crappy but you can function.  I worked from home and then traveled about 1-2 times per month for 2-3 days per week.  I timed my shots and trips so that nobody saw me on Super Blah days and occasional I had work from bed days.  I often would skip a shot (maybe 1-2 per month) if I had to make a 3 day trip.

                                A couple of other thoughts….I took drug holidays (which my doctor recommended) which required me to stop the drug 6-7 days before a beach vacation (so not too much activity).  By day 7-8 my appetite was back and I was back to almost 85-90% and by day 10 that I was feeling really good and eating, drinking, and having fairly active fun again.   The bad news is that when you come back home after 14 total days off of the shots…you are going to hate that night…back to 103 fever, real body shakes followed by a Super Super Blah day.

                                Sometime about 2/3rds of the way through the year, I reduced my shots to 15 units (so by about 25% of full strength) and that really helped on the depth of the Super Blah days.

                                So my net…you can do Interferon with a bit of common sense management.

                                Now back to "should you even do this"….I would really make sure you take a serious look at all of the new drugs that became available over the past year.  For stage 4 patients you have so many better choices than Interferon….but your specific situation may prevent you from taking them.  BUT ABSOLUTELY MAKE SURE YOU ARE TALKING TO A MELANOMA specialist…not just an oncologist.

                                Feel free to message me directly…and I can answer any additional questions you might have about managing the side effects if you do the Interferon path.

                                Best wishes….Michel

                                Gene_S
                                Participant

                                  My first question is are you being seen by a melanoma specalist.  They have the most up to date things available for melanoma as they see it every day and are better equipped than a regular cancer oncologist.

                                  Gene_S
                                  Participant

                                    My first question is are you being seen by a melanoma specalist.  They have the most up to date things available for melanoma as they see it every day and are better equipped than a regular cancer oncologist.

                                    Gene_S
                                    Participant

                                      My first question is are you being seen by a melanoma specalist.  They have the most up to date things available for melanoma as they see it every day and are better equipped than a regular cancer oncologist.

                                      jennunicorn
                                      Participant

                                        I'm wondering, are you not in the United States or Europe? If not, I wonder if the newest drugs are not available in your country which would be why your docotor wouldn't mention them. Certainly, here in the U.S. there would be very little oncologists that would recommend Interferon anymore since Yervoy, Opdivo, and Keytruda are all available for stage IV with much much better results than Interferon. 

                                        Definitely talk to your oncologist about the other options, ask why they didn't mention these newest drugs, and absolutely find a Melanoma specialist if you don't already have one.

                                        I hope all the best for you!

                                        jennunicorn
                                        Participant

                                          I'm wondering, are you not in the United States or Europe? If not, I wonder if the newest drugs are not available in your country which would be why your docotor wouldn't mention them. Certainly, here in the U.S. there would be very little oncologists that would recommend Interferon anymore since Yervoy, Opdivo, and Keytruda are all available for stage IV with much much better results than Interferon. 

                                          Definitely talk to your oncologist about the other options, ask why they didn't mention these newest drugs, and absolutely find a Melanoma specialist if you don't already have one.

                                          I hope all the best for you!

                                          jennunicorn
                                          Participant

                                            I'm wondering, are you not in the United States or Europe? If not, I wonder if the newest drugs are not available in your country which would be why your docotor wouldn't mention them. Certainly, here in the U.S. there would be very little oncologists that would recommend Interferon anymore since Yervoy, Opdivo, and Keytruda are all available for stage IV with much much better results than Interferon. 

                                            Definitely talk to your oncologist about the other options, ask why they didn't mention these newest drugs, and absolutely find a Melanoma specialist if you don't already have one.

                                            I hope all the best for you!

                                              WallyE
                                              Participant

                                                Thank you all so very much for your replies. I am absolutely blown away by all the responses, which are going to help me a great deal to have a meaningful discussion with my Oncologist. We do not have Melanoma Specialists in South Africa – none that I can trace in any event. Not even my Medical Aid can refer me to one. My Oncologist indicated that in her 30 years of practicing she has never had an incidence of Melanoma in the Stomach.

                                                The options given me when I had the lung tumor in 2011 were Verurafenib, DTIC, Ipilimumab, Plexxican, Interferon or watch and wait. Not sure of the spelling for some as they were hand written. We opted for the latter. For the Prostate I had Brachytherapy in July. The drugs mentioned above never came into the discussion so not sure if they are available here in South Africa.

                                                May God bless you all and I trust your challanges with this horrid disease are surmountable. I know I will come out tops – just have to fight it day by day and remain positive even though that is easier said than done at times.

                                                Keep well all and thanks once again

                                                Wally

                                                 

                                                WallyE
                                                Participant

                                                  Thank you all so very much for your replies. I am absolutely blown away by all the responses, which are going to help me a great deal to have a meaningful discussion with my Oncologist. We do not have Melanoma Specialists in South Africa – none that I can trace in any event. Not even my Medical Aid can refer me to one. My Oncologist indicated that in her 30 years of practicing she has never had an incidence of Melanoma in the Stomach.

                                                  The options given me when I had the lung tumor in 2011 were Verurafenib, DTIC, Ipilimumab, Plexxican, Interferon or watch and wait. Not sure of the spelling for some as they were hand written. We opted for the latter. For the Prostate I had Brachytherapy in July. The drugs mentioned above never came into the discussion so not sure if they are available here in South Africa.

                                                  May God bless you all and I trust your challanges with this horrid disease are surmountable. I know I will come out tops – just have to fight it day by day and remain positive even though that is easier said than done at times.

                                                  Keep well all and thanks once again

                                                  Wally

                                                   

                                                  mjanssentx
                                                  Participant

                                                    Wally – there are others on this forum that can speak to the other drugs you have access to….but I would NOT do the Interferon route based upon my experience  (which I don't regret for 3A adjunctive).  You need one of the newer, stronger drugs that gives you a chance at knocking Melanoma down.  

                                                    Do some of you stage 4 experts on this forum have some thoughts?  The stomach location/surgery (and I am assuming you don't have active tumors right now?) are probably the biggest wildcard in this situation that I don't think I have seen mentioned on this forum before.

                                                    Best wishes….Michel

                                                    mjanssentx
                                                    Participant

                                                      Wally – there are others on this forum that can speak to the other drugs you have access to….but I would NOT do the Interferon route based upon my experience  (which I don't regret for 3A adjunctive).  You need one of the newer, stronger drugs that gives you a chance at knocking Melanoma down.  

                                                      Do some of you stage 4 experts on this forum have some thoughts?  The stomach location/surgery (and I am assuming you don't have active tumors right now?) are probably the biggest wildcard in this situation that I don't think I have seen mentioned on this forum before.

                                                      Best wishes….Michel

                                                      mjanssentx
                                                      Participant

                                                        Wally – there are others on this forum that can speak to the other drugs you have access to….but I would NOT do the Interferon route based upon my experience  (which I don't regret for 3A adjunctive).  You need one of the newer, stronger drugs that gives you a chance at knocking Melanoma down.  

                                                        Do some of you stage 4 experts on this forum have some thoughts?  The stomach location/surgery (and I am assuming you don't have active tumors right now?) are probably the biggest wildcard in this situation that I don't think I have seen mentioned on this forum before.

                                                        Best wishes….Michel

                                                        _Paul_
                                                        Participant

                                                          Wally, as others have said, your best bet is Keytruda (pembroluzimab). If you can't get that the next best is ipililumimab (Yervoy). The best results are seen when taken together but you need a melanoma specialist for that since the side effects are much more likely to be serious.

                                                          If you have both pembroluzimab and ipililumimab available but no melanoma specialist, do the pembro first since if you fail it your chances with pembro followed by ipi are greater than ipi followed by pembro.

                                                          Please keep us posted!

                                                          – Paul

                                                          _Paul_
                                                          Participant

                                                            Wally, as others have said, your best bet is Keytruda (pembroluzimab). If you can't get that the next best is ipililumimab (Yervoy). The best results are seen when taken together but you need a melanoma specialist for that since the side effects are much more likely to be serious.

                                                            If you have both pembroluzimab and ipililumimab available but no melanoma specialist, do the pembro first since if you fail it your chances with pembro followed by ipi are greater than ipi followed by pembro.

                                                            Please keep us posted!

                                                            – Paul

                                                            _Paul_
                                                            Participant

                                                              I realized I made a mistake in my reply. In the US it's an ipi/nivolumimab combo. Nivo is similar to pembro but from a different pharmaceutical.

                                                              _Paul_
                                                              Participant

                                                                I realized I made a mistake in my reply. In the US it's an ipi/nivolumimab combo. Nivo is similar to pembro but from a different pharmaceutical.

                                                                _Paul_
                                                                Participant

                                                                  I realized I made a mistake in my reply. In the US it's an ipi/nivolumimab combo. Nivo is similar to pembro but from a different pharmaceutical.

                                                                  _Paul_
                                                                  Participant

                                                                    Wally, as others have said, your best bet is Keytruda (pembroluzimab). If you can't get that the next best is ipililumimab (Yervoy). The best results are seen when taken together but you need a melanoma specialist for that since the side effects are much more likely to be serious.

                                                                    If you have both pembroluzimab and ipililumimab available but no melanoma specialist, do the pembro first since if you fail it your chances with pembro followed by ipi are greater than ipi followed by pembro.

                                                                    Please keep us posted!

                                                                    – Paul

                                                                    WallyE
                                                                    Participant

                                                                      Thank you all so very much for your replies. I am absolutely blown away by all the responses, which are going to help me a great deal to have a meaningful discussion with my Oncologist. We do not have Melanoma Specialists in South Africa – none that I can trace in any event. Not even my Medical Aid can refer me to one. My Oncologist indicated that in her 30 years of practicing she has never had an incidence of Melanoma in the Stomach.

                                                                      The options given me when I had the lung tumor in 2011 were Verurafenib, DTIC, Ipilimumab, Plexxican, Interferon or watch and wait. Not sure of the spelling for some as they were hand written. We opted for the latter. For the Prostate I had Brachytherapy in July. The drugs mentioned above never came into the discussion so not sure if they are available here in South Africa.

                                                                      May God bless you all and I trust your challanges with this horrid disease are surmountable. I know I will come out tops – just have to fight it day by day and remain positive even though that is easier said than done at times.

                                                                      Keep well all and thanks once again

                                                                      Wally

                                                                       

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