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local recurrence – inteferon?
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local recurrence – inteferon?

› Forums › General Melanoma Community › local recurrence – inteferon?

  • Post
    • March 7, 2013 at 3:05 pm
    ruby
    Participant

      Hi all

      I would welcome anyones advice here please

      I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

       

      Hi all

      I would welcome anyones advice here please

      I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

       

      I have now bee told to take interferon for 4 weeks high dose and then 12 months delf administered… I have a 8 month old baby to look after a 13 year old daughter and am scared I will not cope whilst on the course I also live in ireland away from all my family I am put off my the bad side effects but also dont want to regret not taking this chance to see off the monster your thoughts advice anythink welcomed as this is the hardest of decisions..

       

      thank you

       

      rachel

    Viewing 8 reply threads
    • Replies
        • March 7, 2013 at 9:49 pm
        Prd10
        Participant
          Hi Rachel,

          I am sorry you are here and facing this decision. You will see that the topic of interferon is a bit controversial. It’s an old drug with harsh side effects and it’s effectiveness is questionable. I’m pretty sure even those of us that have done it have a hard time speaking positively about it. I had a rather large lesion and a positive sentinel node, I was also 28 and a had a baby at home. For me, everything happened so fast, and it just felt like one bad thing after another, I think if my oncologist told me to jump off a bridge I would have. I didn’t think twice about doing it and I am comfortable with that. I think you are right to question it, but it can be done and you have to do what is right for you.

          I don’t usually respond to interferon posts bc everyone has such different reactions, but I had an 8 month old at home at the time and thought I could share my experience. The first month required a lot of help with the baby. My mom was able to move in with us (although it wasn’t completely necessary) I was at the hospital for about two – three hours a day. I went during his morning nap, came home and had lunch with him, took a nap when he did in the afternoon, had dinner with him then we both went back to bed around 7 or 8pm. It really required effort to enjoy my time with him. I made it through the first month with the typical symptoms: fever, tired, tired again, achy, crabby.

          The maintenance dose is much more manageable. I didn’t need help with the baby logistically and I was able to nap in the afternoon when he did. I know people work while on the treatment, and of course watching him is work, but I did need a nap and rest throughout the day. I knew I wasn’t going to do the full year (I think only 25% finish) it wasn’t how I wanted to spend his first year, and there are studies that show the first month is as effective as it needs to be. I had almost all of the common side effects. It was pretty rough. I don’t regret doing it. If you are unsure you could always take it one week at a time. It doesn’t have to be all or nothing. I wish this was easier. Let me know if you want any more details.

          • March 7, 2013 at 9:49 pm
          Prd10
          Participant
            Hi Rachel,

            I am sorry you are here and facing this decision. You will see that the topic of interferon is a bit controversial. It’s an old drug with harsh side effects and it’s effectiveness is questionable. I’m pretty sure even those of us that have done it have a hard time speaking positively about it. I had a rather large lesion and a positive sentinel node, I was also 28 and a had a baby at home. For me, everything happened so fast, and it just felt like one bad thing after another, I think if my oncologist told me to jump off a bridge I would have. I didn’t think twice about doing it and I am comfortable with that. I think you are right to question it, but it can be done and you have to do what is right for you.

            I don’t usually respond to interferon posts bc everyone has such different reactions, but I had an 8 month old at home at the time and thought I could share my experience. The first month required a lot of help with the baby. My mom was able to move in with us (although it wasn’t completely necessary) I was at the hospital for about two – three hours a day. I went during his morning nap, came home and had lunch with him, took a nap when he did in the afternoon, had dinner with him then we both went back to bed around 7 or 8pm. It really required effort to enjoy my time with him. I made it through the first month with the typical symptoms: fever, tired, tired again, achy, crabby.

            The maintenance dose is much more manageable. I didn’t need help with the baby logistically and I was able to nap in the afternoon when he did. I know people work while on the treatment, and of course watching him is work, but I did need a nap and rest throughout the day. I knew I wasn’t going to do the full year (I think only 25% finish) it wasn’t how I wanted to spend his first year, and there are studies that show the first month is as effective as it needs to be. I had almost all of the common side effects. It was pretty rough. I don’t regret doing it. If you are unsure you could always take it one week at a time. It doesn’t have to be all or nothing. I wish this was easier. Let me know if you want any more details.

            • March 7, 2013 at 9:49 pm
            Prd10
            Participant
              Hi Rachel,

              I am sorry you are here and facing this decision. You will see that the topic of interferon is a bit controversial. It’s an old drug with harsh side effects and it’s effectiveness is questionable. I’m pretty sure even those of us that have done it have a hard time speaking positively about it. I had a rather large lesion and a positive sentinel node, I was also 28 and a had a baby at home. For me, everything happened so fast, and it just felt like one bad thing after another, I think if my oncologist told me to jump off a bridge I would have. I didn’t think twice about doing it and I am comfortable with that. I think you are right to question it, but it can be done and you have to do what is right for you.

              I don’t usually respond to interferon posts bc everyone has such different reactions, but I had an 8 month old at home at the time and thought I could share my experience. The first month required a lot of help with the baby. My mom was able to move in with us (although it wasn’t completely necessary) I was at the hospital for about two – three hours a day. I went during his morning nap, came home and had lunch with him, took a nap when he did in the afternoon, had dinner with him then we both went back to bed around 7 or 8pm. It really required effort to enjoy my time with him. I made it through the first month with the typical symptoms: fever, tired, tired again, achy, crabby.

              The maintenance dose is much more manageable. I didn’t need help with the baby logistically and I was able to nap in the afternoon when he did. I know people work while on the treatment, and of course watching him is work, but I did need a nap and rest throughout the day. I knew I wasn’t going to do the full year (I think only 25% finish) it wasn’t how I wanted to spend his first year, and there are studies that show the first month is as effective as it needs to be. I had almost all of the common side effects. It was pretty rough. I don’t regret doing it. If you are unsure you could always take it one week at a time. It doesn’t have to be all or nothing. I wish this was easier. Let me know if you want any more details.

                • March 7, 2013 at 10:12 pm
                Prd10
                Participant
                  I want to add to this. I should mention that when I pushed my oncologist (he’s a melanoma expert at a center of excellence) on why he still prescribed interferon when the leading US melanoma hospitals don’t he essentially said if you have 10 melanoma experts in a room 5 will say don’t do it bc the side effects outweigh the benefits and the other 5 would say give it a try bc it could help. Of course then he mentioned that I had a high mitotic rate, ulceration and positive lymph node. I’m sort of surprised that this was recommended to you without a positive lymph but either way you should feel confident in either decision
                  • March 8, 2013 at 9:11 am
                  ruby
                  Participant

                    thank you  so much for replying to be 🙂 and yes I am suprised after much research that interferon has been prescribed with neg nodes I think that is my main unsure block.. I just get the remark well it was a local recurrence but this doesnt seem enough to me… I am trying to get an opinion from my original consultant in the UK too.. I hope that you are doing ol for know and that you continue to do so ..

                     

                    thank you again

                    xx

                    • March 8, 2013 at 9:11 am
                    ruby
                    Participant

                      thank you  so much for replying to be 🙂 and yes I am suprised after much research that interferon has been prescribed with neg nodes I think that is my main unsure block.. I just get the remark well it was a local recurrence but this doesnt seem enough to me… I am trying to get an opinion from my original consultant in the UK too.. I hope that you are doing ol for know and that you continue to do so ..

                       

                      thank you again

                      xx

                      • March 8, 2013 at 9:11 am
                      ruby
                      Participant

                        thank you  so much for replying to be 🙂 and yes I am suprised after much research that interferon has been prescribed with neg nodes I think that is my main unsure block.. I just get the remark well it was a local recurrence but this doesnt seem enough to me… I am trying to get an opinion from my original consultant in the UK too.. I hope that you are doing ol for know and that you continue to do so ..

                         

                        thank you again

                        xx

                        • March 8, 2013 at 1:42 pm
                        Hstevens0072
                        Participant
                          I was diagnosed stage IIB negative SNB. my Onc suggested interferon because of my age – 50 – and the ages of my children, saying it might give me a cushion against reoccurrence. I did the entire year. It wasnt easy. I cut back to 32 hours a week at work and pushed thru. My shots were MWF. So TTH I slept in and went to work at noon. Thankfully my employer was flexible. That said….. Fast forward 13 months after last injection and I am now stage IV. Did interferon keep the beast at bay for 2years or did I trade one of my final years coping with the side effects? I do not regret the year on interferon. It may have prolonged my life, it may not have either. I’ll never know. But I do know I do not regret making the choice for interferon.
                          • March 8, 2013 at 1:42 pm
                          Hstevens0072
                          Participant
                            I was diagnosed stage IIB negative SNB. my Onc suggested interferon because of my age – 50 – and the ages of my children, saying it might give me a cushion against reoccurrence. I did the entire year. It wasnt easy. I cut back to 32 hours a week at work and pushed thru. My shots were MWF. So TTH I slept in and went to work at noon. Thankfully my employer was flexible. That said….. Fast forward 13 months after last injection and I am now stage IV. Did interferon keep the beast at bay for 2years or did I trade one of my final years coping with the side effects? I do not regret the year on interferon. It may have prolonged my life, it may not have either. I’ll never know. But I do know I do not regret making the choice for interferon.
                            • March 8, 2013 at 1:42 pm
                            Hstevens0072
                            Participant
                              I was diagnosed stage IIB negative SNB. my Onc suggested interferon because of my age – 50 – and the ages of my children, saying it might give me a cushion against reoccurrence. I did the entire year. It wasnt easy. I cut back to 32 hours a week at work and pushed thru. My shots were MWF. So TTH I slept in and went to work at noon. Thankfully my employer was flexible. That said….. Fast forward 13 months after last injection and I am now stage IV. Did interferon keep the beast at bay for 2years or did I trade one of my final years coping with the side effects? I do not regret the year on interferon. It may have prolonged my life, it may not have either. I’ll never know. But I do know I do not regret making the choice for interferon.
                              • March 8, 2013 at 5:56 pm
                              Prd10
                              Participant
                                Interesting, I also recurred 13 months after stopping, though I only made it three months. I share your thoughts exactly. I like to think it may have slowed it down, but will never know and I also don’t regret it. I must say I felt great those 13 months and focused hard on diet and exercise. Of course I also think that helped, but again who knows.

                                I am still stage three and NED after lymph node removal. This time around I declined adjuvant. I have continued with the changes to my diet and excersise simply to be in the best health possible. my diet still consists of carbs, desserts, and wine just less of it and more of the good stuff.

                                • March 8, 2013 at 5:56 pm
                                Prd10
                                Participant
                                  Interesting, I also recurred 13 months after stopping, though I only made it three months. I share your thoughts exactly. I like to think it may have slowed it down, but will never know and I also don’t regret it. I must say I felt great those 13 months and focused hard on diet and exercise. Of course I also think that helped, but again who knows.

                                  I am still stage three and NED after lymph node removal. This time around I declined adjuvant. I have continued with the changes to my diet and excersise simply to be in the best health possible. my diet still consists of carbs, desserts, and wine just less of it and more of the good stuff.

                                  • March 8, 2013 at 5:56 pm
                                  Prd10
                                  Participant
                                    Interesting, I also recurred 13 months after stopping, though I only made it three months. I share your thoughts exactly. I like to think it may have slowed it down, but will never know and I also don’t regret it. I must say I felt great those 13 months and focused hard on diet and exercise. Of course I also think that helped, but again who knows.

                                    I am still stage three and NED after lymph node removal. This time around I declined adjuvant. I have continued with the changes to my diet and excersise simply to be in the best health possible. my diet still consists of carbs, desserts, and wine just less of it and more of the good stuff.

                                    • March 7, 2013 at 10:12 pm
                                    Prd10
                                    Participant
                                      I want to add to this. I should mention that when I pushed my oncologist (he’s a melanoma expert at a center of excellence) on why he still prescribed interferon when the leading US melanoma hospitals don’t he essentially said if you have 10 melanoma experts in a room 5 will say don’t do it bc the side effects outweigh the benefits and the other 5 would say give it a try bc it could help. Of course then he mentioned that I had a high mitotic rate, ulceration and positive lymph node. I’m sort of surprised that this was recommended to you without a positive lymph but either way you should feel confident in either decision
                                      • March 7, 2013 at 10:12 pm
                                      Prd10
                                      Participant
                                        I want to add to this. I should mention that when I pushed my oncologist (he’s a melanoma expert at a center of excellence) on why he still prescribed interferon when the leading US melanoma hospitals don’t he essentially said if you have 10 melanoma experts in a room 5 will say don’t do it bc the side effects outweigh the benefits and the other 5 would say give it a try bc it could help. Of course then he mentioned that I had a high mitotic rate, ulceration and positive lymph node. I’m sort of surprised that this was recommended to you without a positive lymph but either way you should feel confident in either decision
                                      • March 8, 2013 at 2:49 pm
                                      Tina D
                                      Participant

                                        Rachel,

                                        So sorry you have had the local recurrence and I can imagine how upsetting with such a little one in your arms! I had 6 months of interferon and stopped at that point due to side effects. My thoughts are that if you do decide this is the best course of treatment, you can know that just because you start it does NOT mean you must be able to complete the full year of it. The first month is the toughest, to be certain, and it is the one they feel more confident about the positive effect of , too ( as far as I know that is still the case). I would not have been able to care alone for a little one while I was on the treatment, but everyone is different. Anyway… at every given point, if the side effecs are unmanageable, your dosage can be reduced, or the drug can be discontinued. It took me a few weeks to start feeling better once I went off of it, but I suffered no long-term side effects from it that I am aware of. So, I am not saying "take it" or " dont take it" — just throwing the idea out there that if you DO decide to take it, you do not have to feel like it is a full 12 months or nothing at all.

                                        TTina

                                        • March 8, 2013 at 2:49 pm
                                        Tina D
                                        Participant

                                          Rachel,

                                          So sorry you have had the local recurrence and I can imagine how upsetting with such a little one in your arms! I had 6 months of interferon and stopped at that point due to side effects. My thoughts are that if you do decide this is the best course of treatment, you can know that just because you start it does NOT mean you must be able to complete the full year of it. The first month is the toughest, to be certain, and it is the one they feel more confident about the positive effect of , too ( as far as I know that is still the case). I would not have been able to care alone for a little one while I was on the treatment, but everyone is different. Anyway… at every given point, if the side effecs are unmanageable, your dosage can be reduced, or the drug can be discontinued. It took me a few weeks to start feeling better once I went off of it, but I suffered no long-term side effects from it that I am aware of. So, I am not saying "take it" or " dont take it" — just throwing the idea out there that if you DO decide to take it, you do not have to feel like it is a full 12 months or nothing at all.

                                          TTina

                                          • March 8, 2013 at 2:49 pm
                                          Tina D
                                          Participant

                                            Rachel,

                                            So sorry you have had the local recurrence and I can imagine how upsetting with such a little one in your arms! I had 6 months of interferon and stopped at that point due to side effects. My thoughts are that if you do decide this is the best course of treatment, you can know that just because you start it does NOT mean you must be able to complete the full year of it. The first month is the toughest, to be certain, and it is the one they feel more confident about the positive effect of , too ( as far as I know that is still the case). I would not have been able to care alone for a little one while I was on the treatment, but everyone is different. Anyway… at every given point, if the side effecs are unmanageable, your dosage can be reduced, or the drug can be discontinued. It took me a few weeks to start feeling better once I went off of it, but I suffered no long-term side effects from it that I am aware of. So, I am not saying "take it" or " dont take it" — just throwing the idea out there that if you DO decide to take it, you do not have to feel like it is a full 12 months or nothing at all.

                                            TTina

                                            • March 10, 2013 at 7:45 am
                                            ruby
                                            Participant

                                              thank you all for your replies your experiences and opinions have been no end of value to me I am back at on cology on Monday and feel armed with more information and questions thank you so much xx

                                              • March 10, 2013 at 7:45 am
                                              ruby
                                              Participant

                                                thank you all for your replies your experiences and opinions have been no end of value to me I am back at on cology on Monday and feel armed with more information and questions thank you so much xx

                                                • March 10, 2013 at 7:45 am
                                                ruby
                                                Participant

                                                  thank you all for your replies your experiences and opinions have been no end of value to me I am back at on cology on Monday and feel armed with more information and questions thank you so much xx

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