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Interferon or new clinical trial??

Forums General Melanoma Community Interferon or new clinical trial??

  • Post
    Joe.Pro
    Participant

      Diagnosed last week with Melanoma on the bottom of my foot after my podiatrist did a punch biopsy on a lesion I've had for approx 18 months.  It was pretty nodular and had started to grow in the last couple of months especially.  

      Brain MRI was clear

      PET scan showed a lymph node in my groin (which I can feel) as suspicious of cancer.  

      Surgery next week to remove the lesion on my foot (along with several toes) and all of the lymph nodes in my groin/pelvis on the affected side of my body.

      Here is my question…

      i am being treated at Dana Farber in Boston and my onc asked me if I'd like to be in a trial for a specialized vaccine that is made from my specific tumor.  Apparently they take the tissue from the tumor and create this vaccine with the hopes of preventing recurrence. Sounds interesting but since this is a new trial (only 5 or so people so far) the data is very limited (however she did say that mel hasn't returned in any of the enrollee' so far although I didn't ask about time frame) or….

      Interferon

      Seems like a tough decision, was hoping maybe you guys could help me make it easier?

      Thanks so much for your feedback and God Bless each and everyone of you!

      Joe

    Viewing 26 reply threads
    • Replies
        dvd
        Participant

          Personally, I would opt for the investigative trial. Many think that interferon is an outmoded and obsolete treatment in early stage melanoma. Review of previous research shows that progression free survival may be slightly lengthened after interferon treatment, but there is minimal, if any, effect on overall survival. Side effects to interferon vary, but many drop out of treatment early because of them.

          Targeted immunotherapy appears to be the direction melanoma treatment is going. Trials, so far, have tended to show positive outcomes. There are no guarantees, of course, and there are risks, but my personal opinion is that the possible rewards are greater with targeted immunotherapy as opposed to interferon.

          Good luck with your choice and with any/all future treatment.

          DVD

          dvd
          Participant

            Personally, I would opt for the investigative trial. Many think that interferon is an outmoded and obsolete treatment in early stage melanoma. Review of previous research shows that progression free survival may be slightly lengthened after interferon treatment, but there is minimal, if any, effect on overall survival. Side effects to interferon vary, but many drop out of treatment early because of them.

            Targeted immunotherapy appears to be the direction melanoma treatment is going. Trials, so far, have tended to show positive outcomes. There are no guarantees, of course, and there are risks, but my personal opinion is that the possible rewards are greater with targeted immunotherapy as opposed to interferon.

            Good luck with your choice and with any/all future treatment.

            DVD

            dvd
            Participant

              Personally, I would opt for the investigative trial. Many think that interferon is an outmoded and obsolete treatment in early stage melanoma. Review of previous research shows that progression free survival may be slightly lengthened after interferon treatment, but there is minimal, if any, effect on overall survival. Side effects to interferon vary, but many drop out of treatment early because of them.

              Targeted immunotherapy appears to be the direction melanoma treatment is going. Trials, so far, have tended to show positive outcomes. There are no guarantees, of course, and there are risks, but my personal opinion is that the possible rewards are greater with targeted immunotherapy as opposed to interferon.

              Good luck with your choice and with any/all future treatment.

              DVD

              Andrew1725
              Participant

                Joe,

                Based on the information you've provided in your post, I would almost certainly do the trial if I were you. Just for context, I am a Stage 3 melanoma patient currently in my 6th month of Interferon treatment. Some pros and cons that come immediately to mind:

                Pros (of doing the trial):

                -Most would not consider to be Inteferon to be a very effective treatment. It has not demonstrated a positive effect on overall survival and has only a modest benefit as far as delaying possible recurrence of melanoma.

                -Interferon is a difficult treatment with a variety of side effects that have an impact on quality of life. For me, the fatigue and mental side effects are the worst. I live a relatively normal life while on Interferon, but I do need to sleep more and my level of energy and performance at work is noticeably decreased. The side effects for some can be quite debilitating.

                -The overall results of recent melanoma research have been very good compared to historical results, and a trial drug today probably stands a much greater chance of being successful than in the past.

                Cons (of doing the trial):

                -As you said, the data is limited or non-existent on this vaccine.

                – You may have side effects from the vaccine that negatively impact your quality of life or cause you to have to leave the trial. This sounds like it's Phase I of a clinical trial and safety of the drug probably has not been fully evaluated.

                – Trials conducted on Stage 3 patients with resected melanoma have not yielded any treatments that are FDA approved for Stage 3 resected melanoma to replace Interferon and previous melanoma vaccine trials have been unsuccessful.

                I'd have a conversation with whoever is in charge of the trial if you can and ask questions. Good luck with whatever choice you make.

                 

                  amelanomajourney
                  Participant

                    I'm on my 10th month of interferon and totally agree with the above.

                    If you have a chance to do a promising trial – go for it!

                    amelanomajourney
                    Participant

                      I'm on my 10th month of interferon and totally agree with the above.

                      If you have a chance to do a promising trial – go for it!

                      amelanomajourney
                      Participant

                        I'm on my 10th month of interferon and totally agree with the above.

                        If you have a chance to do a promising trial – go for it!

                      Andrew1725
                      Participant

                        Joe,

                        Based on the information you've provided in your post, I would almost certainly do the trial if I were you. Just for context, I am a Stage 3 melanoma patient currently in my 6th month of Interferon treatment. Some pros and cons that come immediately to mind:

                        Pros (of doing the trial):

                        -Most would not consider to be Inteferon to be a very effective treatment. It has not demonstrated a positive effect on overall survival and has only a modest benefit as far as delaying possible recurrence of melanoma.

                        -Interferon is a difficult treatment with a variety of side effects that have an impact on quality of life. For me, the fatigue and mental side effects are the worst. I live a relatively normal life while on Interferon, but I do need to sleep more and my level of energy and performance at work is noticeably decreased. The side effects for some can be quite debilitating.

                        -The overall results of recent melanoma research have been very good compared to historical results, and a trial drug today probably stands a much greater chance of being successful than in the past.

                        Cons (of doing the trial):

                        -As you said, the data is limited or non-existent on this vaccine.

                        – You may have side effects from the vaccine that negatively impact your quality of life or cause you to have to leave the trial. This sounds like it's Phase I of a clinical trial and safety of the drug probably has not been fully evaluated.

                        – Trials conducted on Stage 3 patients with resected melanoma have not yielded any treatments that are FDA approved for Stage 3 resected melanoma to replace Interferon and previous melanoma vaccine trials have been unsuccessful.

                        I'd have a conversation with whoever is in charge of the trial if you can and ask questions. Good luck with whatever choice you make.

                         

                        Andrew1725
                        Participant

                          Joe,

                          Based on the information you've provided in your post, I would almost certainly do the trial if I were you. Just for context, I am a Stage 3 melanoma patient currently in my 6th month of Interferon treatment. Some pros and cons that come immediately to mind:

                          Pros (of doing the trial):

                          -Most would not consider to be Inteferon to be a very effective treatment. It has not demonstrated a positive effect on overall survival and has only a modest benefit as far as delaying possible recurrence of melanoma.

                          -Interferon is a difficult treatment with a variety of side effects that have an impact on quality of life. For me, the fatigue and mental side effects are the worst. I live a relatively normal life while on Interferon, but I do need to sleep more and my level of energy and performance at work is noticeably decreased. The side effects for some can be quite debilitating.

                          -The overall results of recent melanoma research have been very good compared to historical results, and a trial drug today probably stands a much greater chance of being successful than in the past.

                          Cons (of doing the trial):

                          -As you said, the data is limited or non-existent on this vaccine.

                          – You may have side effects from the vaccine that negatively impact your quality of life or cause you to have to leave the trial. This sounds like it's Phase I of a clinical trial and safety of the drug probably has not been fully evaluated.

                          – Trials conducted on Stage 3 patients with resected melanoma have not yielded any treatments that are FDA approved for Stage 3 resected melanoma to replace Interferon and previous melanoma vaccine trials have been unsuccessful.

                          I'd have a conversation with whoever is in charge of the trial if you can and ask questions. Good luck with whatever choice you make.

                           

                          BrianP
                          Participant

                            Joe,

                            If I were in your shoes I would do the trial with out a doubt.  I did interferon a few years ago because there just weren't any other options even just a few short years ago.  You have another option and I would jump at the opportunity.  Best of luck to you.

                            Brian

                            BrianP
                            Participant

                              Joe,

                              If I were in your shoes I would do the trial with out a doubt.  I did interferon a few years ago because there just weren't any other options even just a few short years ago.  You have another option and I would jump at the opportunity.  Best of luck to you.

                              Brian

                              BrianP
                              Participant

                                Joe,

                                If I were in your shoes I would do the trial with out a doubt.  I did interferon a few years ago because there just weren't any other options even just a few short years ago.  You have another option and I would jump at the opportunity.  Best of luck to you.

                                Brian

                                SABKLYN
                                Participant

                                  Hi Joe,

                                  i think as you read about the treatment of melanoma, less and less centers embrace interferon.  I would definitely look into the trial.  As with anything else though, it's important to ask the right questions relative to toxicity, potential exclusion from other therapies, etc.  I personally believe that the new PD drugs and these types of vaccine therapies are what will serve as the cutting edge of treatment for melanoma.  You have a great knowledgeable team working with you who can provide this insight.

                                  good luck!

                                  SABKLYN
                                  Participant

                                    Hi Joe,

                                    i think as you read about the treatment of melanoma, less and less centers embrace interferon.  I would definitely look into the trial.  As with anything else though, it's important to ask the right questions relative to toxicity, potential exclusion from other therapies, etc.  I personally believe that the new PD drugs and these types of vaccine therapies are what will serve as the cutting edge of treatment for melanoma.  You have a great knowledgeable team working with you who can provide this insight.

                                    good luck!

                                    SABKLYN
                                    Participant

                                      Hi Joe,

                                      i think as you read about the treatment of melanoma, less and less centers embrace interferon.  I would definitely look into the trial.  As with anything else though, it's important to ask the right questions relative to toxicity, potential exclusion from other therapies, etc.  I personally believe that the new PD drugs and these types of vaccine therapies are what will serve as the cutting edge of treatment for melanoma.  You have a great knowledgeable team working with you who can provide this insight.

                                      good luck!

                                      arthurjedi007
                                      Participant

                                        I have to chime in for the trial as well.

                                        Artie

                                        arthurjedi007
                                        Participant

                                          I have to chime in for the trial as well.

                                          Artie

                                          arthurjedi007
                                          Participant

                                            I have to chime in for the trial as well.

                                            Artie

                                            arthur
                                            Participant

                                              I completed the yearlong regiment of Interferon and I would recommend the clinical trial. Interferon, for me, was like a sledge hammer to my immune system. I spent the first month, the induction phase, almost bed-ridden except for when I had to go to my injections: 5 days a week for the first month through an IV. Vomiting, headaches (usually mild), chills, extreme fatigue, loss of appetite and sort of a metallic taste in my mouth to where nothing tasted proper were the most frequent side effects I experienced.

                                              After the first month of IV injections we went to a self-administered shot 3 times a week for the next 11 months and this was much more manageable. Usually I'd feel sick 3-5 hours after the shot and that would last anywhere from 8-24 hours. Sometimes however I'd wake up and feel almost fine just fatigued although if I missed a shot the next one would always be especially hellish so don’t miss one, or if you have to miss one I’d lower the dosage to about 66% for the next shot so that my body would handle it a little better, however discuss that with your doctor before doing anything like that. The key was to take the shot a few hours before bed and actually one of the ‘beneficial’ effects of Interferon is it put me out cold sleeping, as someone who struggles sleeping at night this was a nice change of pace.

                                              You probably didn't need to do a lot of research to find out that Interferon isn't the most effective and in my case I had my recurrence about 6 months after I completed treatment. I'm not saying don't do the Interferon because obviously every case is different, but for me the side effects were bordering on debilitating for the first month and caused me to miss a semester of school and time from work. For the record I was 22 and in relatively good shape and still had a tough time with it.

                                              Best of luck with your surgery and whatever treatment option you end up doing.

                                               

                                              arthur
                                              Participant

                                                I completed the yearlong regiment of Interferon and I would recommend the clinical trial. Interferon, for me, was like a sledge hammer to my immune system. I spent the first month, the induction phase, almost bed-ridden except for when I had to go to my injections: 5 days a week for the first month through an IV. Vomiting, headaches (usually mild), chills, extreme fatigue, loss of appetite and sort of a metallic taste in my mouth to where nothing tasted proper were the most frequent side effects I experienced.

                                                After the first month of IV injections we went to a self-administered shot 3 times a week for the next 11 months and this was much more manageable. Usually I'd feel sick 3-5 hours after the shot and that would last anywhere from 8-24 hours. Sometimes however I'd wake up and feel almost fine just fatigued although if I missed a shot the next one would always be especially hellish so don’t miss one, or if you have to miss one I’d lower the dosage to about 66% for the next shot so that my body would handle it a little better, however discuss that with your doctor before doing anything like that. The key was to take the shot a few hours before bed and actually one of the ‘beneficial’ effects of Interferon is it put me out cold sleeping, as someone who struggles sleeping at night this was a nice change of pace.

                                                You probably didn't need to do a lot of research to find out that Interferon isn't the most effective and in my case I had my recurrence about 6 months after I completed treatment. I'm not saying don't do the Interferon because obviously every case is different, but for me the side effects were bordering on debilitating for the first month and caused me to miss a semester of school and time from work. For the record I was 22 and in relatively good shape and still had a tough time with it.

                                                Best of luck with your surgery and whatever treatment option you end up doing.

                                                 

                                                  Joe.Pro
                                                  Participant

                                                    Wow – I am so blessed for all of your responses and feedback.  Thank you all so much for your contributions.  

                                                    Toby0987
                                                    Participant

                                                      I am 3b melanoma and went to mayo in Rochester.  My Dr-said interferon is out dated and he didn't recommend it. So I didn't do it-that was 2013

                                                      Toby0987
                                                      Participant

                                                        I am 3b melanoma and went to mayo in Rochester.  My Dr-said interferon is out dated and he didn't recommend it. So I didn't do it-that was 2013

                                                        Toby0987
                                                        Participant

                                                          I am 3b melanoma and went to mayo in Rochester.  My Dr-said interferon is out dated and he didn't recommend it. So I didn't do it-that was 2013

                                                          Joe.Pro
                                                          Participant

                                                            Wow – I am so blessed for all of your responses and feedback.  Thank you all so much for your contributions.  

                                                            Joe.Pro
                                                            Participant

                                                              Wow – I am so blessed for all of your responses and feedback.  Thank you all so much for your contributions.  

                                                            arthur
                                                            Participant

                                                              I completed the yearlong regiment of Interferon and I would recommend the clinical trial. Interferon, for me, was like a sledge hammer to my immune system. I spent the first month, the induction phase, almost bed-ridden except for when I had to go to my injections: 5 days a week for the first month through an IV. Vomiting, headaches (usually mild), chills, extreme fatigue, loss of appetite and sort of a metallic taste in my mouth to where nothing tasted proper were the most frequent side effects I experienced.

                                                              After the first month of IV injections we went to a self-administered shot 3 times a week for the next 11 months and this was much more manageable. Usually I'd feel sick 3-5 hours after the shot and that would last anywhere from 8-24 hours. Sometimes however I'd wake up and feel almost fine just fatigued although if I missed a shot the next one would always be especially hellish so don’t miss one, or if you have to miss one I’d lower the dosage to about 66% for the next shot so that my body would handle it a little better, however discuss that with your doctor before doing anything like that. The key was to take the shot a few hours before bed and actually one of the ‘beneficial’ effects of Interferon is it put me out cold sleeping, as someone who struggles sleeping at night this was a nice change of pace.

                                                              You probably didn't need to do a lot of research to find out that Interferon isn't the most effective and in my case I had my recurrence about 6 months after I completed treatment. I'm not saying don't do the Interferon because obviously every case is different, but for me the side effects were bordering on debilitating for the first month and caused me to miss a semester of school and time from work. For the record I was 22 and in relatively good shape and still had a tough time with it.

                                                              Best of luck with your surgery and whatever treatment option you end up doing.

                                                               

                                                              Bubbles
                                                              Participant

                                                                Hey Joe,

                                                                More food for thought.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html   There are even more trials.  I wish you my best.  Celeste

                                                                Bubbles
                                                                Participant

                                                                  Hey Joe,

                                                                  More food for thought.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html   There are even more trials.  I wish you my best.  Celeste

                                                                  Bubbles
                                                                  Participant

                                                                    Hey Joe,

                                                                    More food for thought.  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html   There are even more trials.  I wish you my best.  Celeste

                                                                    Speedster
                                                                    Participant

                                                                      Joe,

                                                                      I've vey just entered today a Phase III trial comparing two of the best immunotherapy drugs Ipilumumab vs Nivolumab.  As I suspect you're Stage III as I am, you would quality 30 days after your lymph node surgery. This is a great trial for a more proven set of treatments.  Bristol  Myers is the sponsor and has FDA approval for both drugs for Stage IV patients with promising results.  Toxicity is a concern, yet given it has been used for years now, it's more well understood.  I'm hopeful having had my first treatment today. 

                                                                      Speedster
                                                                      Participant

                                                                        Joe,

                                                                        I've vey just entered today a Phase III trial comparing two of the best immunotherapy drugs Ipilumumab vs Nivolumab.  As I suspect you're Stage III as I am, you would quality 30 days after your lymph node surgery. This is a great trial for a more proven set of treatments.  Bristol  Myers is the sponsor and has FDA approval for both drugs for Stage IV patients with promising results.  Toxicity is a concern, yet given it has been used for years now, it's more well understood.  I'm hopeful having had my first treatment today. 

                                                                        Speedster
                                                                        Participant

                                                                          Joe,

                                                                          I've vey just entered today a Phase III trial comparing two of the best immunotherapy drugs Ipilumumab vs Nivolumab.  As I suspect you're Stage III as I am, you would quality 30 days after your lymph node surgery. This is a great trial for a more proven set of treatments.  Bristol  Myers is the sponsor and has FDA approval for both drugs for Stage IV patients with promising results.  Toxicity is a concern, yet given it has been used for years now, it's more well understood.  I'm hopeful having had my first treatment today. 

                                                                            Joe.Pro
                                                                            Participant

                                                                              That is great!  I think I replied to your other post first before I saw this one lol.  I'm considering this trial or a new vaccine trial…decisions, decisions!  God is good and I know I'll pick the path he intended for me.

                                                                              Speedster
                                                                              Participant

                                                                                Ah yes, a friend in the faith.  If we are informed (using the brain and intellect he gave us), walk in prayer, wise counsel and discernment of the Holy Spirit, I think it's hard for us to choose poorly as He is with us.  Yet, no certain outcome, which makes it hard and scary for me.  He is God and I'm not.  

                                                                                Joe.Pro
                                                                                Participant

                                                                                  Amen Speedster – God has a plan and I'm using this opportunity to strengthen my and my families faith along with helping others in any way I can.

                                                                                  Joe.Pro
                                                                                  Participant

                                                                                    Amen Speedster – God has a plan and I'm using this opportunity to strengthen my and my families faith along with helping others in any way I can.

                                                                                    Joe.Pro
                                                                                    Participant

                                                                                      Amen Speedster – God has a plan and I'm using this opportunity to strengthen my and my families faith along with helping others in any way I can.

                                                                                      Speedster
                                                                                      Participant

                                                                                        Ah yes, a friend in the faith.  If we are informed (using the brain and intellect he gave us), walk in prayer, wise counsel and discernment of the Holy Spirit, I think it's hard for us to choose poorly as He is with us.  Yet, no certain outcome, which makes it hard and scary for me.  He is God and I'm not.  

                                                                                        Speedster
                                                                                        Participant

                                                                                          Ah yes, a friend in the faith.  If we are informed (using the brain and intellect he gave us), walk in prayer, wise counsel and discernment of the Holy Spirit, I think it's hard for us to choose poorly as He is with us.  Yet, no certain outcome, which makes it hard and scary for me.  He is God and I'm not.  

                                                                                          Joe.Pro
                                                                                          Participant

                                                                                            That is great!  I think I replied to your other post first before I saw this one lol.  I'm considering this trial or a new vaccine trial…decisions, decisions!  God is good and I know I'll pick the path he intended for me.

                                                                                            Joe.Pro
                                                                                            Participant

                                                                                              That is great!  I think I replied to your other post first before I saw this one lol.  I'm considering this trial or a new vaccine trial…decisions, decisions!  God is good and I know I'll pick the path he intended for me.

                                                                                            Squash
                                                                                            Participant

                                                                                              It is a no brainer. Do the trial or do nothing.

                                                                                              When are they going to stop giving Interferon a proven highly toxic treatment with no OS benefit. WTF!  

                                                                                               

                                                                                              Squash
                                                                                              Participant

                                                                                                It is a no brainer. Do the trial or do nothing.

                                                                                                When are they going to stop giving Interferon a proven highly toxic treatment with no OS benefit. WTF!  

                                                                                                 

                                                                                                Squash
                                                                                                Participant

                                                                                                  It is a no brainer. Do the trial or do nothing.

                                                                                                  When are they going to stop giving Interferon a proven highly toxic treatment with no OS benefit. WTF!  

                                                                                                   

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