› Forums › General Melanoma Community › Should I elect to have Interferon treatments?
- This topic has 36 replies, 10 voices, and was last updated 8 years, 1 month ago by jpg.
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- March 10, 2016 at 10:35 am
Hello,
I'm brand new to this but thankful to be able to reach out for advise. I was diagnosed with 2B Melanoma on my upper lip in Sept 2015. I had the tumor removed & the Sentinel Lymph Node biopsy came back negative. I had plastic surgery to remove a microscopic cell or two near the nerve lining and reconstruct the upper lip. Everything went well and my lip is beautiful – you wouldn't know it even happened. I followed up with 5 weeks of daily radiation targeted to the upper lip area, to prevent any reoccurrence. I recently saw my surgical oncologist for a follow-up, which included a CT scan which came back negative. He floated the idea of Interferon as an additional, elective, preventative measure & set me up with a consultation with a hematologist oncologist. During the consultation I asked if I didn't pursue Interferon what the chances were of NOT having a reoccurrence and he said 80-85%. The Interferon increases those percentages by 10%. I'm seeking a second opinion because I'm scared of the effects during and after the treatment. I am a very active 55 year old woman, currently melanoma free and healthy. I am a Christian and have deep faith in God and am blessed with a wonderful husband and beautiful family. I am a career professional in the financial industry and work for a major brokerage firm (high stress job). I work out weekly with Spin/TRX classes and try to maintain a healthy life-work balance. I'm really on the fence about starting the Interferon treatments for a year and the side effects during and after. I would appreciate any insight you offer. God bless!
- Replies
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- March 10, 2016 at 11:20 am
Spinbeast – I am a 3A who was diagnosed in Nov 14. I just finished a full year of Interferon in Dec of 15. At the time of my diagnosis there were almost NO alternatives for a 3A other than watch and wait or Interferon.
I survived the year of Interferon but let there be no illusion….a year on Interferon is a very tough one indeed (search some of my previous post for detailed descriptions). At the time it made sense to me because while the benefits were indeed were small, (basically delaying a reoccurrence if it was going to happen by 6-12 months and only a small increase to overall survival rates AND the fact that the approved alternatives for Stage 4 were still in the testing mode and not FDA approved at the time), I was doing something positive to improve my chances..
Today the world is very different, Stage 4 is NOT the nearly automatic death sentence it once was. There are MANY new alternatives that offer real hope that didn't exist just a few years ago.
What choice would I make today? i would taken one of the new adjunctive options that are now available for Stage 3 (probably IPI at 3 mg which is technically not approved but available). For you, I don't think you have that option for 2B but I would NOT take the Interferon route given the changes in the industry.
Instead go for heavy monitoring and live your life to the max.
Best wishes
Michel
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- March 10, 2016 at 11:20 am
Spinbeast – I am a 3A who was diagnosed in Nov 14. I just finished a full year of Interferon in Dec of 15. At the time of my diagnosis there were almost NO alternatives for a 3A other than watch and wait or Interferon.
I survived the year of Interferon but let there be no illusion….a year on Interferon is a very tough one indeed (search some of my previous post for detailed descriptions). At the time it made sense to me because while the benefits were indeed were small, (basically delaying a reoccurrence if it was going to happen by 6-12 months and only a small increase to overall survival rates AND the fact that the approved alternatives for Stage 4 were still in the testing mode and not FDA approved at the time), I was doing something positive to improve my chances..
Today the world is very different, Stage 4 is NOT the nearly automatic death sentence it once was. There are MANY new alternatives that offer real hope that didn't exist just a few years ago.
What choice would I make today? i would taken one of the new adjunctive options that are now available for Stage 3 (probably IPI at 3 mg which is technically not approved but available). For you, I don't think you have that option for 2B but I would NOT take the Interferon route given the changes in the industry.
Instead go for heavy monitoring and live your life to the max.
Best wishes
Michel
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- March 12, 2016 at 2:25 am
Hi Michel,
Thank you for sharing your story with me and your insight. I will definitely take your advice into consideration and most likely not opt for the Interferon. I wish you all the best in your life's journey. God bless.
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- March 12, 2016 at 2:25 am
Hi Michel,
Thank you for sharing your story with me and your insight. I will definitely take your advice into consideration and most likely not opt for the Interferon. I wish you all the best in your life's journey. God bless.
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- March 12, 2016 at 2:25 am
Hi Michel,
Thank you for sharing your story with me and your insight. I will definitely take your advice into consideration and most likely not opt for the Interferon. I wish you all the best in your life's journey. God bless.
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- March 10, 2016 at 11:20 am
Spinbeast – I am a 3A who was diagnosed in Nov 14. I just finished a full year of Interferon in Dec of 15. At the time of my diagnosis there were almost NO alternatives for a 3A other than watch and wait or Interferon.
I survived the year of Interferon but let there be no illusion….a year on Interferon is a very tough one indeed (search some of my previous post for detailed descriptions). At the time it made sense to me because while the benefits were indeed were small, (basically delaying a reoccurrence if it was going to happen by 6-12 months and only a small increase to overall survival rates AND the fact that the approved alternatives for Stage 4 were still in the testing mode and not FDA approved at the time), I was doing something positive to improve my chances..
Today the world is very different, Stage 4 is NOT the nearly automatic death sentence it once was. There are MANY new alternatives that offer real hope that didn't exist just a few years ago.
What choice would I make today? i would taken one of the new adjunctive options that are now available for Stage 3 (probably IPI at 3 mg which is technically not approved but available). For you, I don't think you have that option for 2B but I would NOT take the Interferon route given the changes in the industry.
Instead go for heavy monitoring and live your life to the max.
Best wishes
Michel
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- March 10, 2016 at 1:56 pm
A personal decision of course, but based on the information you presented, I would not do Interferon.
Assuming the recurrence statistics quoted by your doctor to be correct, you already stand a significant chance of not having a recurrence. Let's also assume that the 10% benefit quoted to you re: Inteferon is also correct (which is a matter of some debate, but let's just assume). We're then talking about a 1.5%-2% less chance of recurrence. This, to me, does not justify enduring the Interferon treatment.
I am stage 3B, who had 3 macroscopically positive (2 quite large) lymph nodes in my armpit and I did Interferon. The side effects vary some from person to person in type and severity, but for me they were significant. Your career sounds important to you, and I have to tell you that doing Interferon set me back a little professionally. Physical and mental side effects made it very difficult for me to work at anything close to full strength. It was a struggle. I missed full days and parts of days at times. In fact, I stopped the treatment 2 months early when I decided that I had had enough. I am also an active person who loves to participate in sports (basketball, golf, hiking) and it became very difficult to exercise.
Despite what I wrote above, I was able to lead a relatively normal life on Interferon in most respects and I am NED 18 months after the surgery to remove the melanoma from my back and the nodes. But it doesn't seem worth it for you.
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- March 10, 2016 at 1:56 pm
A personal decision of course, but based on the information you presented, I would not do Interferon.
Assuming the recurrence statistics quoted by your doctor to be correct, you already stand a significant chance of not having a recurrence. Let's also assume that the 10% benefit quoted to you re: Inteferon is also correct (which is a matter of some debate, but let's just assume). We're then talking about a 1.5%-2% less chance of recurrence. This, to me, does not justify enduring the Interferon treatment.
I am stage 3B, who had 3 macroscopically positive (2 quite large) lymph nodes in my armpit and I did Interferon. The side effects vary some from person to person in type and severity, but for me they were significant. Your career sounds important to you, and I have to tell you that doing Interferon set me back a little professionally. Physical and mental side effects made it very difficult for me to work at anything close to full strength. It was a struggle. I missed full days and parts of days at times. In fact, I stopped the treatment 2 months early when I decided that I had had enough. I am also an active person who loves to participate in sports (basketball, golf, hiking) and it became very difficult to exercise.
Despite what I wrote above, I was able to lead a relatively normal life on Interferon in most respects and I am NED 18 months after the surgery to remove the melanoma from my back and the nodes. But it doesn't seem worth it for you.
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- March 10, 2016 at 1:56 pm
A personal decision of course, but based on the information you presented, I would not do Interferon.
Assuming the recurrence statistics quoted by your doctor to be correct, you already stand a significant chance of not having a recurrence. Let's also assume that the 10% benefit quoted to you re: Inteferon is also correct (which is a matter of some debate, but let's just assume). We're then talking about a 1.5%-2% less chance of recurrence. This, to me, does not justify enduring the Interferon treatment.
I am stage 3B, who had 3 macroscopically positive (2 quite large) lymph nodes in my armpit and I did Interferon. The side effects vary some from person to person in type and severity, but for me they were significant. Your career sounds important to you, and I have to tell you that doing Interferon set me back a little professionally. Physical and mental side effects made it very difficult for me to work at anything close to full strength. It was a struggle. I missed full days and parts of days at times. In fact, I stopped the treatment 2 months early when I decided that I had had enough. I am also an active person who loves to participate in sports (basketball, golf, hiking) and it became very difficult to exercise.
Despite what I wrote above, I was able to lead a relatively normal life on Interferon in most respects and I am NED 18 months after the surgery to remove the melanoma from my back and the nodes. But it doesn't seem worth it for you.
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- March 10, 2016 at 2:07 pm
Helping Melanoma Patients Decide Whether to Choose Adjuvant High-Dose Interferon-α2b
http://theoncologist.alphamedpress.org/content/10/9/739.full
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- March 10, 2016 at 2:07 pm
Helping Melanoma Patients Decide Whether to Choose Adjuvant High-Dose Interferon-α2b
http://theoncologist.alphamedpress.org/content/10/9/739.full
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- March 10, 2016 at 2:07 pm
Helping Melanoma Patients Decide Whether to Choose Adjuvant High-Dose Interferon-α2b
http://theoncologist.alphamedpress.org/content/10/9/739.full
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- March 10, 2016 at 2:14 pm
Interferon is being used less and less these days due to its side effects and low efficacy. You also have to be on it for an extended period of time and do self-injections. The thing to ask yourself is, as an active 55 year old who works in the finacial industry is whether you want to put yourself through all that for a mere 10% increase in your melanoma not returning when the odds of it NOT returning are already at 80-85%, which is darn good.
With regard to interferon, when you read the stories on this forum you will see 4 different scenarios:
1. The individual made it to the end of treatment, had no recurrences, and has no regrets.
2. The individual made it to the end of treatment, but had a recurrence anyway.
3. The individual had a recurrence during treatment.
4. The individual had to stop treatment due to the side effects.
I'm sure your doctor explained to you that the other option is "observation only" where you see your oncologist and get a CT or PET Scan (or both) on regular visits that decrease over a period of time. For example, the first year of your diagnosis, you may need to do this every 3 months, second year every 4 months, after the second year every 6 months. Eventually you should get down to a yearly visit. The Observation Only option is a viable one and people do OK with it.
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- March 10, 2016 at 2:14 pm
Interferon is being used less and less these days due to its side effects and low efficacy. You also have to be on it for an extended period of time and do self-injections. The thing to ask yourself is, as an active 55 year old who works in the finacial industry is whether you want to put yourself through all that for a mere 10% increase in your melanoma not returning when the odds of it NOT returning are already at 80-85%, which is darn good.
With regard to interferon, when you read the stories on this forum you will see 4 different scenarios:
1. The individual made it to the end of treatment, had no recurrences, and has no regrets.
2. The individual made it to the end of treatment, but had a recurrence anyway.
3. The individual had a recurrence during treatment.
4. The individual had to stop treatment due to the side effects.
I'm sure your doctor explained to you that the other option is "observation only" where you see your oncologist and get a CT or PET Scan (or both) on regular visits that decrease over a period of time. For example, the first year of your diagnosis, you may need to do this every 3 months, second year every 4 months, after the second year every 6 months. Eventually you should get down to a yearly visit. The Observation Only option is a viable one and people do OK with it.
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- March 10, 2016 at 2:14 pm
Interferon is being used less and less these days due to its side effects and low efficacy. You also have to be on it for an extended period of time and do self-injections. The thing to ask yourself is, as an active 55 year old who works in the finacial industry is whether you want to put yourself through all that for a mere 10% increase in your melanoma not returning when the odds of it NOT returning are already at 80-85%, which is darn good.
With regard to interferon, when you read the stories on this forum you will see 4 different scenarios:
1. The individual made it to the end of treatment, had no recurrences, and has no regrets.
2. The individual made it to the end of treatment, but had a recurrence anyway.
3. The individual had a recurrence during treatment.
4. The individual had to stop treatment due to the side effects.
I'm sure your doctor explained to you that the other option is "observation only" where you see your oncologist and get a CT or PET Scan (or both) on regular visits that decrease over a period of time. For example, the first year of your diagnosis, you may need to do this every 3 months, second year every 4 months, after the second year every 6 months. Eventually you should get down to a yearly visit. The Observation Only option is a viable one and people do OK with it.
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- March 10, 2016 at 8:46 pm
Hi spinbeast55, I would read the link that Janner has given and do some of your own research on the % etc. After all that maybe go back and read old post by people who have taken the drug and read what their experiences have been. I find that nurses that work in cancer wards are one of the best sources of reference. They get to see the effects that cancer drugs have on the patients. I made the decision to take Interferon and I lasted for the 4 week high dose phase and then due to my side effects which were off the charts decided to stop. Of all my decisions that I have had to make along this journey, Interferon is the only one I regret making. If you have some vaccation time saved up and a good support network of family and friends that can look after you for 4 weeks then go for it. I have heard that the 2 phase where you self inject at home is not as bad, lower drug dose I believe. I think it might also help you in making a decision to seek a 2nd opionion from a Melanoma specialist!!! Best wishes!!! Ed
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- March 10, 2016 at 8:46 pm
Hi spinbeast55, I would read the link that Janner has given and do some of your own research on the % etc. After all that maybe go back and read old post by people who have taken the drug and read what their experiences have been. I find that nurses that work in cancer wards are one of the best sources of reference. They get to see the effects that cancer drugs have on the patients. I made the decision to take Interferon and I lasted for the 4 week high dose phase and then due to my side effects which were off the charts decided to stop. Of all my decisions that I have had to make along this journey, Interferon is the only one I regret making. If you have some vaccation time saved up and a good support network of family and friends that can look after you for 4 weeks then go for it. I have heard that the 2 phase where you self inject at home is not as bad, lower drug dose I believe. I think it might also help you in making a decision to seek a 2nd opionion from a Melanoma specialist!!! Best wishes!!! Ed
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- March 10, 2016 at 8:46 pm
Hi spinbeast55, I would read the link that Janner has given and do some of your own research on the % etc. After all that maybe go back and read old post by people who have taken the drug and read what their experiences have been. I find that nurses that work in cancer wards are one of the best sources of reference. They get to see the effects that cancer drugs have on the patients. I made the decision to take Interferon and I lasted for the 4 week high dose phase and then due to my side effects which were off the charts decided to stop. Of all my decisions that I have had to make along this journey, Interferon is the only one I regret making. If you have some vaccation time saved up and a good support network of family and friends that can look after you for 4 weeks then go for it. I have heard that the 2 phase where you self inject at home is not as bad, lower drug dose I believe. I think it might also help you in making a decision to seek a 2nd opionion from a Melanoma specialist!!! Best wishes!!! Ed
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- March 10, 2016 at 9:34 pm
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- March 10, 2016 at 9:34 pm
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- March 10, 2016 at 9:34 pm
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- March 10, 2016 at 10:02 pm
Hi and welcome to our warrior community!
That's fantastic news about your scarring and plastic surgery results – as a woman, our face is so important!!
As for your question about Interferon, this is a VERY controversial topic. There is so much info out there about the side effects and dangers of the drug – and there are more than you can imagine. From what I understand, interferon helps only against ulcerated primaries, and has almost no efficacy against anything else. At stage IIB, I would personally suggest taking a "watch and wait" approach. If you get to stage III, then I would re-evaluate your options then, as there's tons of drugs that would probably be approved by then. In the meantime, maybe add in some stress-reduction techniques (meditation, yoga, hypnosis) because I swear my melanoma came from not handling my stress well at my job in the operating room.
I say all this because I am ulcerated stage IIIC and on the peg interferon called Sylatron, and the side effects are a plenty. This is a self-injected regiment, with a high dose for the first 2 months, and then half dose for the remaining year. The full protocol is 5 years, but I'll be happy to make it through a year. If you want to know more about the side effects, you can PM me or visit my blog, listed below. It really is a tough treatment, and NOT a walk in the park. I'm not working right now, and I couldn't imagine doing so for the first 2 months of treatment.
Wishing you all the best!
.
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- March 10, 2016 at 10:02 pm
Hi and welcome to our warrior community!
That's fantastic news about your scarring and plastic surgery results – as a woman, our face is so important!!
As for your question about Interferon, this is a VERY controversial topic. There is so much info out there about the side effects and dangers of the drug – and there are more than you can imagine. From what I understand, interferon helps only against ulcerated primaries, and has almost no efficacy against anything else. At stage IIB, I would personally suggest taking a "watch and wait" approach. If you get to stage III, then I would re-evaluate your options then, as there's tons of drugs that would probably be approved by then. In the meantime, maybe add in some stress-reduction techniques (meditation, yoga, hypnosis) because I swear my melanoma came from not handling my stress well at my job in the operating room.
I say all this because I am ulcerated stage IIIC and on the peg interferon called Sylatron, and the side effects are a plenty. This is a self-injected regiment, with a high dose for the first 2 months, and then half dose for the remaining year. The full protocol is 5 years, but I'll be happy to make it through a year. If you want to know more about the side effects, you can PM me or visit my blog, listed below. It really is a tough treatment, and NOT a walk in the park. I'm not working right now, and I couldn't imagine doing so for the first 2 months of treatment.
Wishing you all the best!
.
-
- March 10, 2016 at 10:02 pm
Hi and welcome to our warrior community!
That's fantastic news about your scarring and plastic surgery results – as a woman, our face is so important!!
As for your question about Interferon, this is a VERY controversial topic. There is so much info out there about the side effects and dangers of the drug – and there are more than you can imagine. From what I understand, interferon helps only against ulcerated primaries, and has almost no efficacy against anything else. At stage IIB, I would personally suggest taking a "watch and wait" approach. If you get to stage III, then I would re-evaluate your options then, as there's tons of drugs that would probably be approved by then. In the meantime, maybe add in some stress-reduction techniques (meditation, yoga, hypnosis) because I swear my melanoma came from not handling my stress well at my job in the operating room.
I say all this because I am ulcerated stage IIIC and on the peg interferon called Sylatron, and the side effects are a plenty. This is a self-injected regiment, with a high dose for the first 2 months, and then half dose for the remaining year. The full protocol is 5 years, but I'll be happy to make it through a year. If you want to know more about the side effects, you can PM me or visit my blog, listed below. It really is a tough treatment, and NOT a walk in the park. I'm not working right now, and I couldn't imagine doing so for the first 2 months of treatment.
Wishing you all the best!
.
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- March 11, 2016 at 11:13 am
No point sugar coating it but interferon should not even be offered anymore.
Given the high toxicity and lack of clinical evidence supporting its benefit it should be withdrawn especially considering the new drugs that are now available for melanoma.
Its a disgarce really.
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- March 11, 2016 at 11:13 am
No point sugar coating it but interferon should not even be offered anymore.
Given the high toxicity and lack of clinical evidence supporting its benefit it should be withdrawn especially considering the new drugs that are now available for melanoma.
Its a disgarce really.
-
- March 11, 2016 at 11:13 am
No point sugar coating it but interferon should not even be offered anymore.
Given the high toxicity and lack of clinical evidence supporting its benefit it should be withdrawn especially considering the new drugs that are now available for melanoma.
Its a disgarce really.
-
- March 11, 2016 at 11:14 am
No point sugar coating it but interferon should not even be offered anymore.
Given the high toxicity and lack of clinical evidence supporting its benefit it should be withdrawn especially considering the new drugs that are now available for melanoma.
Its a disgarce really.
-
- March 11, 2016 at 11:14 am
No point sugar coating it but interferon should not even be offered anymore.
Given the high toxicity and lack of clinical evidence supporting its benefit it should be withdrawn especially considering the new drugs that are now available for melanoma.
Its a disgarce really.
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- March 12, 2016 at 4:21 pm
Please check this out: http://forum.melanomainternational.org/mif/viewtopic
Article shows no proven benefit survival for interferon. Good luck!
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- March 12, 2016 at 4:21 pm
Please check this out: http://forum.melanomainternational.org/mif/viewtopic
Article shows no proven benefit survival for interferon. Good luck!
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- March 12, 2016 at 4:21 pm
Please check this out: http://forum.melanomainternational.org/mif/viewtopic
Article shows no proven benefit survival for interferon. Good luck!
-
- March 11, 2016 at 11:14 am
No point sugar coating it but interferon should not even be offered anymore.
Given the high toxicity and lack of clinical evidence supporting its benefit it should be withdrawn especially considering the new drugs that are now available for melanoma.
Its a disgarce really.
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