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Interferon and Radiation

Forums General Melanoma Community Interferon and Radiation

  • Post
    scots
    Participant

      I was  diagnosed with melanoma after a cycst was removed from the back of my head in September.

      Pet/CT -clear, WLE – clear margins, SNB – neg,  melanoma 3.7

      I was  diagnosed with melanoma after a cycst was removed from the back of my head in September.

      Pet/CT -clear, WLE – clear margins, SNB – neg,  melanoma 3.7

      My oncologist has suggested interferon(1 month high dose, 11 month low dose) and radiation.  I have an appt. with the radiation oncologist on Thursday to discuss treatment.  I'm suppose to start interferon next Monday.  This has all happened so fast, so many questions.  Has anyone had any experience with goning through both treatments at the same time? or what order you went through both treatments.  After reading about interferon on the bulletin board I'm wondering if I can do both.

       

      Thanks

      Scot

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        Fen
        Participant

           

          Hi Scott –     If your SNB came back clear I think (emphasis on think) that you are stage 1 or 2.  Interferon is not usually suggested for either of these stages, although it is for stage 3.  Even with Stage 3 there is controversy over interferon with some research suggesting that the 1 month high dose is as effective as the high dose plus 11 months of low dose.

          Are you seeing a melanoma specialist?  Even some large medical centers do not have an oncologist whose speciality is melanoma so double-check that your oncologist is one.

          Good luck and keep us posted on what you're doing.

          Fen

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            scots
            Participant

              I have been told I'm a stage 2b – c (pushing a 3 because of nerve involvement. satelite matises around the melanoma, clark leved 5).    I had my WLE and SNB at UVA Medical Center.  They have a melanoma board there which also recommended that I do both interferon and radiation.  My oncologist (not a doctor at UVA medical center) has also suggested both treatments.  I guess the only way to know if your doctor is a melanoma specialist is to ask?  

               

              Thanks for your input

              scot

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              scots
              Participant

                I have been told I'm a stage 2b – c (pushing a 3 because of nerve involvement. satelite matises around the melanoma, clark leved 5).    I had my WLE and SNB at UVA Medical Center.  They have a melanoma board there which also recommended that I do both interferon and radiation.  My oncologist (not a doctor at UVA medical center) has also suggested both treatments.  I guess the only way to know if your doctor is a melanoma specialist is to ask?  

                 

                Thanks for your input

                scot

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              Fen
              Participant

                 

                Hi Scott –     If your SNB came back clear I think (emphasis on think) that you are stage 1 or 2.  Interferon is not usually suggested for either of these stages, although it is for stage 3.  Even with Stage 3 there is controversy over interferon with some research suggesting that the 1 month high dose is as effective as the high dose plus 11 months of low dose.

                Are you seeing a melanoma specialist?  Even some large medical centers do not have an oncologist whose speciality is melanoma so double-check that your oncologist is one.

                Good luck and keep us posted on what you're doing.

                Fen

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                Phil S
                Participant

                  Scot        My husband is half way through his one year of interferon, and has been able to continue to work and complete most of his daily activities around the house and with our small children.  He does require extra rest, but manageable.  He did his radiation before he started interferon, and I think it would have been tough doing both together.  Our local doctor felt that radiation should happen first, so thats what we did. 

                  His radiation was interrupted after two weeks due to some other medical concerns, and then we went to a major cancer center to talk to a melanoma specialist.  They felt we should not resume the radiation and so we didn't.  They also were very clear that interferon was a personal choice, so after much thought and consideration we decided to go ahead with interferon, knowing that if this treatment was too life alternating we would stop it.  I know we needed to try something for our mental health and neither one of us regrets he is doing interferon.  Only time will tell, if we get some positive benefits from interferon.  So, as many have said before me, get your facts on treatments, see a melanoma specialist, and then discuss with your family the options and go with what feels right for you.  There is some literature that suggests that you should start interferon as soon after diagnosis and surgery as possible, so thats another consideration.  Good luck and feel confident in whatever direction/treatment you decide upon!                       Valerie (Phil's Wife) 

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                    scots
                    Participant

                      Valerie,

                      I hope that I'm able to manage work and family like your husband. I also have 2 kids.   My wife and I have also decided to start interferon. The oncologist suggested we start as soon as we wanted which as of now is next Monday.  The only thing that may change that would be if the radiation oncologist suggest doing one treatment at a time.   I 'm scheduled to see one radiation oncologist at UVA medical Center(UVA is a 2hr. drive on way) and the other in my home town at the Blue Ridge Cancer Care.  We decide to do the interferon in my home town because a 4 hour round trip every day for 4 weeks would may be very hard on me, family and work.  Was your husbands first month on interferon treated close to your home?  I need to look into setting up a consult with a melanoma specialist. 

                      Thanks for sharing your experiences.

                      Scot

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                      Phil S
                      Participant

                        Scot      As with Gwen, my husband has an melanoma oncologist at Dana Farber in Boston and that is where he has all his CAT/PET/MRI scans.  We feel very fortunate that we have this relationship with Dana Farber, because if he does have a reoccurrence they have clinical trials and great working knowledge of the melanoma community and the newest treatments.  However, since we live in upstate NY, my husband has a local oncologist in Saratoga, who is also wonderful.  My husband receives all his interferon locally, as he continues to work and we need life as simple as possible, without traveling long distances.  He had the port put in his arm for the first month of HD interferon at our local hospital and they also monitor all his blood tests locally.  They will continue to test your liver function and blood counts throughout the year of treatment.  My husband had frequent blood work during the first month, and all was good.  So, now we just see the local doctor once a month for exam and blood work. Currently, we travel to Dana Farber every 4-5 months for the scans.

                        Just know that everyone handles interferon differently and the first night of High Dose was Phil's worse with fever, chills, etc.  He never felt that bad after that evening, but continues to struggle with fatigue and weight loss.  He has lost at least 30 pounds so far, but my husband is also a very restrictive eater (no meat,dairy,etc).  One of his doctor suggested that if he could keep his weight up a little, that would help with the fatigue.  I also have noticed that Phil seems better when he is getting some physical activity (cutting our wood for winter). 

                        I am glad that your wife is also supporting your decision on interferon, I clearly feel that Phil and I are a team against this disease.  Good luck and keep us posted on your progress.   Valerie (Phil's wife)

                        Please feel free to e-mail us if you have any questions, during your interferon treatment.  My husband would be glad to reply to any of your concerns.  Our e-mail is  [email protected]

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                        Phil S
                        Participant

                          Scot      As with Gwen, my husband has an melanoma oncologist at Dana Farber in Boston and that is where he has all his CAT/PET/MRI scans.  We feel very fortunate that we have this relationship with Dana Farber, because if he does have a reoccurrence they have clinical trials and great working knowledge of the melanoma community and the newest treatments.  However, since we live in upstate NY, my husband has a local oncologist in Saratoga, who is also wonderful.  My husband receives all his interferon locally, as he continues to work and we need life as simple as possible, without traveling long distances.  He had the port put in his arm for the first month of HD interferon at our local hospital and they also monitor all his blood tests locally.  They will continue to test your liver function and blood counts throughout the year of treatment.  My husband had frequent blood work during the first month, and all was good.  So, now we just see the local doctor once a month for exam and blood work. Currently, we travel to Dana Farber every 4-5 months for the scans.

                          Just know that everyone handles interferon differently and the first night of High Dose was Phil's worse with fever, chills, etc.  He never felt that bad after that evening, but continues to struggle with fatigue and weight loss.  He has lost at least 30 pounds so far, but my husband is also a very restrictive eater (no meat,dairy,etc).  One of his doctor suggested that if he could keep his weight up a little, that would help with the fatigue.  I also have noticed that Phil seems better when he is getting some physical activity (cutting our wood for winter). 

                          I am glad that your wife is also supporting your decision on interferon, I clearly feel that Phil and I are a team against this disease.  Good luck and keep us posted on your progress.   Valerie (Phil's wife)

                          Please feel free to e-mail us if you have any questions, during your interferon treatment.  My husband would be glad to reply to any of your concerns.  Our e-mail is  [email protected]

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                          scots
                          Participant

                            Valerie,

                            I hope that I'm able to manage work and family like your husband. I also have 2 kids.   My wife and I have also decided to start interferon. The oncologist suggested we start as soon as we wanted which as of now is next Monday.  The only thing that may change that would be if the radiation oncologist suggest doing one treatment at a time.   I 'm scheduled to see one radiation oncologist at UVA medical Center(UVA is a 2hr. drive on way) and the other in my home town at the Blue Ridge Cancer Care.  We decide to do the interferon in my home town because a 4 hour round trip every day for 4 weeks would may be very hard on me, family and work.  Was your husbands first month on interferon treated close to your home?  I need to look into setting up a consult with a melanoma specialist. 

                            Thanks for sharing your experiences.

                            Scot

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                          Phil S
                          Participant

                            Scot        My husband is half way through his one year of interferon, and has been able to continue to work and complete most of his daily activities around the house and with our small children.  He does require extra rest, but manageable.  He did his radiation before he started interferon, and I think it would have been tough doing both together.  Our local doctor felt that radiation should happen first, so thats what we did. 

                            His radiation was interrupted after two weeks due to some other medical concerns, and then we went to a major cancer center to talk to a melanoma specialist.  They felt we should not resume the radiation and so we didn't.  They also were very clear that interferon was a personal choice, so after much thought and consideration we decided to go ahead with interferon, knowing that if this treatment was too life alternating we would stop it.  I know we needed to try something for our mental health and neither one of us regrets he is doing interferon.  Only time will tell, if we get some positive benefits from interferon.  So, as many have said before me, get your facts on treatments, see a melanoma specialist, and then discuss with your family the options and go with what feels right for you.  There is some literature that suggests that you should start interferon as soon after diagnosis and surgery as possible, so thats another consideration.  Good luck and feel confident in whatever direction/treatment you decide upon!                       Valerie (Phil's Wife) 

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                            Gwen in Maine
                            Participant

                              Hi Scot,

                              My doctors wanted me to recover a bit from each treatment before starting the next. I had surgery at the end of April 2009 (to remove lymph nodes on neck). Started high dose radiation treatments to the area the first week of June ( 2x per week/ 2.5 wks) and started HD interferon the first week of July. I was able to do the entire year of Interferon (3x/week LD) but did require extra rest, especially when starting a new week after 2 days off. The high dose, IV month in the beginning, can be tough. I didn't work during that time and our family got help with meals. I did the interferon treatment with a local oncologist but usually am seen by a melanoma specialist at Dana Farber.

                              I hope your treatment goes smoothly.

                              Gwen

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                                Laurie from maine
                                Participant

                                  Hi,

                                  I also went to Boston to see specialists,  but did my radiation and interferon locally.    My cancer  in my lymph nodes in groin.  I had radiation then high dose then low dose.  I tolerated the high dose really well which surprised us all(used my anti nauseau meds in beginning and bad chills) I only worked part time,  the low dose was tougher for me.  I lost 20 pounds, all food tasted like it had gone bad, had trouble breathing and fatigue.  I only made it thru 6 months of low dose before my liver just couldnt tolerate it.  It was at that point I chose to walk away from interferon, I had choice to wait and try again once liver got better but we chose to stop.  I will say Mass General and Dana Farber specialists told my husband and my self that it was my decision to do the interferon, both specialists seemed to have opinion that it is a quality of life thing – if you are willing to deal with side effects then do it but not to let it ruin a year of your life (at least that is what we felt they were saying)  My husband and I chose to do the interferon just to have some control and be doing something.   I am glad I did.  I am currently year and half  NED and all my side effectsfrom the interferon  have gone away.

                                  good luck!

                                  laurie from maine stage 3

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                                  Laurie from maine
                                  Participant

                                    Hi,

                                    I also went to Boston to see specialists,  but did my radiation and interferon locally.    My cancer  in my lymph nodes in groin.  I had radiation then high dose then low dose.  I tolerated the high dose really well which surprised us all(used my anti nauseau meds in beginning and bad chills) I only worked part time,  the low dose was tougher for me.  I lost 20 pounds, all food tasted like it had gone bad, had trouble breathing and fatigue.  I only made it thru 6 months of low dose before my liver just couldnt tolerate it.  It was at that point I chose to walk away from interferon, I had choice to wait and try again once liver got better but we chose to stop.  I will say Mass General and Dana Farber specialists told my husband and my self that it was my decision to do the interferon, both specialists seemed to have opinion that it is a quality of life thing – if you are willing to deal with side effects then do it but not to let it ruin a year of your life (at least that is what we felt they were saying)  My husband and I chose to do the interferon just to have some control and be doing something.   I am glad I did.  I am currently year and half  NED and all my side effectsfrom the interferon  have gone away.

                                    good luck!

                                    laurie from maine stage 3

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                                    scots
                                    Participant

                                      Did you have any issues with the radiation treatment?

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                                      Gwen in Maine
                                      Participant

                                        No, and I was a bit surprised about it. There was a little dryness and soreness in my throat, but that was all. I hardly felt like anything had happened.

                                        Gwen

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                                        Gwen in Maine
                                        Participant

                                          No, and I was a bit surprised about it. There was a little dryness and soreness in my throat, but that was all. I hardly felt like anything had happened.

                                          Gwen

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                                          Laurie from maine
                                          Participant

                                            I did not have any issues.  I was lucky.  I was given the lotion to put on the area to prevent skin problems.  I also swam everyday to help my leg.    I believe they told me that because the site where they were sending the radiaiton for me(my right groin) did not have any major organs around it  makes it easier for your body?  Not sure but thought that was they told me.  I think they said if radiation is sent to an area with organs nearby it takes a lot more out of you.

                                            laurie from maine

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                                            scots
                                            Participant

                                              I will be recieving the radiation on the back of my head.  I'm concerned recivieing radiation in that area.  I see the radiation oncologlist on Thursday so I should now more then.

                                              Scot

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                                              scots
                                              Participant

                                                The radiation oncologist (Dr. Read at UVA) suggested that I receive radiation therapy 2x week for 5 weeks. He also said that it would not be a problem to do interferon and the radiation treatment at the same time. I will probably be two weeks into HD interferon when I start the radiation treatment.  I start the interferon tomorrow.   I'm a bit stressed and nervous because I don't know how it will affect me.  I have read that effects everyone differently.  I planning on working.. will I be able to work?   Any last minute advice?                        

                                                 I have read and received lots of information at MRF that I would not have had otherwise. Thanks to everyone.

                                                Scot

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                                                Fen
                                                Participant

                                                  Scot – you're going to hate hearing this – but everyone really is different with interferon.  When I read posts I try to determine variables that affect a person's interferon experience – age? gender? overall health? – and I can't figure it out.   

                                                  Just do the best you can and go easy on yourself. Depression is a common side effect so keep on top of that and use an anti-depressant if you need to. Drink lots of water and rest.

                                                  Good luck and keep us posted!!

                                                  Fen

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                                                  Fen
                                                  Participant

                                                    Scot – you're going to hate hearing this – but everyone really is different with interferon.  When I read posts I try to determine variables that affect a person's interferon experience – age? gender? overall health? – and I can't figure it out.   

                                                    Just do the best you can and go easy on yourself. Depression is a common side effect so keep on top of that and use an anti-depressant if you need to. Drink lots of water and rest.

                                                    Good luck and keep us posted!!

                                                    Fen

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                                                    scots
                                                    Participant

                                                      The radiation oncologist (Dr. Read at UVA) suggested that I receive radiation therapy 2x week for 5 weeks. He also said that it would not be a problem to do interferon and the radiation treatment at the same time. I will probably be two weeks into HD interferon when I start the radiation treatment.  I start the interferon tomorrow.   I'm a bit stressed and nervous because I don't know how it will affect me.  I have read that effects everyone differently.  I planning on working.. will I be able to work?   Any last minute advice?                        

                                                       I have read and received lots of information at MRF that I would not have had otherwise. Thanks to everyone.

                                                      Scot

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                                                      scots
                                                      Participant

                                                        I will be recieving the radiation on the back of my head.  I'm concerned recivieing radiation in that area.  I see the radiation oncologlist on Thursday so I should now more then.

                                                        Scot

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                                                        Laurie from maine
                                                        Participant

                                                          I did not have any issues.  I was lucky.  I was given the lotion to put on the area to prevent skin problems.  I also swam everyday to help my leg.    I believe they told me that because the site where they were sending the radiaiton for me(my right groin) did not have any major organs around it  makes it easier for your body?  Not sure but thought that was they told me.  I think they said if radiation is sent to an area with organs nearby it takes a lot more out of you.

                                                          laurie from maine

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                                                          scots
                                                          Participant

                                                            Did you have any issues with the radiation treatment?

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                                                          Gwen in Maine
                                                          Participant

                                                            Hi Scot,

                                                            My doctors wanted me to recover a bit from each treatment before starting the next. I had surgery at the end of April 2009 (to remove lymph nodes on neck). Started high dose radiation treatments to the area the first week of June ( 2x per week/ 2.5 wks) and started HD interferon the first week of July. I was able to do the entire year of Interferon (3x/week LD) but did require extra rest, especially when starting a new week after 2 days off. The high dose, IV month in the beginning, can be tough. I didn't work during that time and our family got help with meals. I did the interferon treatment with a local oncologist but usually am seen by a melanoma specialist at Dana Farber.

                                                            I hope your treatment goes smoothly.

                                                            Gwen

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