› Forums › General Melanoma Community › Interferon or new clinical trial??
- This topic has 45 replies, 12 voices, and was last updated 9 years ago by Squash.
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- April 13, 2015 at 6:49 pm
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
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- April 13, 2015 at 7:41 pm
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
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- April 13, 2015 at 7:41 pm
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
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- April 13, 2015 at 7:41 pm
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
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- April 13, 2015 at 7:51 pm
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.
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- April 16, 2015 at 3:08 am
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!
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- April 16, 2015 at 3:08 am
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!
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- April 16, 2015 at 3:08 am
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!
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- April 13, 2015 at 7:51 pm
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.
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- April 13, 2015 at 7:51 pm
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.
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- April 13, 2015 at 8:22 pm
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
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- April 13, 2015 at 8:22 pm
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
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- April 13, 2015 at 8:22 pm
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
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- April 13, 2015 at 8:44 pm
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!
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- April 13, 2015 at 8:44 pm
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!
-
- April 13, 2015 at 8:44 pm
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!
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- April 13, 2015 at 9:40 pm
I have to chime in for the trial as well.
Artie
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- April 13, 2015 at 9:40 pm
I have to chime in for the trial as well.
Artie
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- April 13, 2015 at 9:40 pm
I have to chime in for the trial as well.
Artie
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- April 13, 2015 at 11:30 pm
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.
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- April 13, 2015 at 11:30 pm
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.
-
- April 13, 2015 at 11:30 pm
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.
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- April 14, 2015 at 1:06 am
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
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- April 14, 2015 at 1:06 am
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
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- April 14, 2015 at 1:06 am
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
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- April 15, 2015 at 3:59 am
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.
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- April 15, 2015 at 3:59 am
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.
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- April 15, 2015 at 3:59 am
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.
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- April 16, 2015 at 2:08 am
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.
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- April 16, 2015 at 2:08 am
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.
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- April 16, 2015 at 2:08 am
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.
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Tagged: cutaneous melanoma
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