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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.

       

        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.

       

      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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