Patient experiences with Interferon Alpha

Hi Michael,

My husband did one month of high dose interferon.  He did not continue with the 11 month self injections because he had the worse side effect profile that his docs had seen so they decided to stop there.  I can tell you that drinking LOTS of water is recommended, and one thing we found helpful for severe chills was keeping a blanket in the dryer and firing it up when that happened.  Most give Tylenol and benedryl with the infusion or pretreat, but if your docs do not, you may want to consider doing that before you go in for it and keep it on hand for fevers after.

Hopefully you will tolerate it well.  Best wishes!

Hi Michael,

My husband did one month of high dose interferon.  He did not continue with the 11 month self injections because he had the worse side effect profile that his docs had seen so they decided to stop there.  I can tell you that drinking LOTS of water is recommended, and one thing we found helpful for severe chills was keeping a blanket in the dryer and firing it up when that happened.  Most give Tylenol and benedryl with the infusion or pretreat, but if your docs do not, you may want to consider doing that before you go in for it and keep it on hand for fevers after.

Hopefully you will tolerate it well.  Best wishes!

Hi Michael,

My husband did one month of high dose interferon.  He did not continue with the 11 month self injections because he had the worse side effect profile that his docs had seen so they decided to stop there.  I can tell you that drinking LOTS of water is recommended, and one thing we found helpful for severe chills was keeping a blanket in the dryer and firing it up when that happened.  Most give Tylenol and benedryl with the infusion or pretreat, but if your docs do not, you may want to consider doing that before you go in for it and keep it on hand for fevers after.

Hopefully you will tolerate it well.  Best wishes!

It's a controversial treatment with many melanoma centers no longer supporting it.   Is your oncologist suggesting it?  

It's a controversial treatment with many melanoma centers no longer supporting it.   Is your oncologist suggesting it?  

It's a controversial treatment with many melanoma centers no longer supporting it.   Is your oncologist suggesting it?  

Your doctor is not up to date on melanoma treatments.  And the stats are wrong for it. 

Here is a great article by Paul Chapman at Sloan Kettering

http://theoncologist.alphamedpress.org/content/10/9/739.full

Your doctor is not up to date on melanoma treatments.  And the stats are wrong for it. 

Here is a great article by Paul Chapman at Sloan Kettering

http://theoncologist.alphamedpress.org/content/10/9/739.full

Your doctor is not up to date on melanoma treatments.  And the stats are wrong for it. 

Here is a great article by Paul Chapman at Sloan Kettering

http://theoncologist.alphamedpress.org/content/10/9/739.full

Michael

I know that interferon is controversial but I think it is a decision only you can make, and there are lots of people who have done the year with no regrets.

but to answer your question, my son did interferon for a year in 2009-10. He was in college at the time. He did take one semester off because the first month was everyday. After that he went back to school while doing the 3x a week injections. 

For him the first month was the hardest,,after that it was mostly fatigue but he timed the injections to have the least affect on his schedule. He was able to work part time and take classes full time. 

Good luck with whatever you decide

Becky

Michael

I know that interferon is controversial but I think it is a decision only you can make, and there are lots of people who have done the year with no regrets.

but to answer your question, my son did interferon for a year in 2009-10. He was in college at the time. He did take one semester off because the first month was everyday. After that he went back to school while doing the 3x a week injections. 

For him the first month was the hardest,,after that it was mostly fatigue but he timed the injections to have the least affect on his schedule. He was able to work part time and take classes full time. 

Good luck with whatever you decide

Becky

Michael

I know that interferon is controversial but I think it is a decision only you can make, and there are lots of people who have done the year with no regrets.

but to answer your question, my son did interferon for a year in 2009-10. He was in college at the time. He did take one semester off because the first month was everyday. After that he went back to school while doing the 3x a week injections. 

For him the first month was the hardest,,after that it was mostly fatigue but he timed the injections to have the least affect on his schedule. He was able to work part time and take classes full time. 

Good luck with whatever you decide

Becky

Not sure why you would consider Interferon… the risk/reward is not there. No survival benefit whatsoever. High toxicities so you would likely feel terrible for a year. Only potential benefit is a delay in recurrence… for me, if it would not make me live any longer and make me sick for a year I would pass. 

Kevin

Not sure why you would consider Interferon… the risk/reward is not there. No survival benefit whatsoever. High toxicities so you would likely feel terrible for a year. Only potential benefit is a delay in recurrence… for me, if it would not make me live any longer and make me sick for a year I would pass. 

Kevin

Not sure why you would consider Interferon… the risk/reward is not there. No survival benefit whatsoever. High toxicities so you would likely feel terrible for a year. Only potential benefit is a delay in recurrence… for me, if it would not make me live any longer and make me sick for a year I would pass. 

Kevin

Before you make a final decision about interferon, I strongly suggest that you get a second opinion from a melanoma specialty center, especially one that conducts a lot of clinical trials. You are fortunate to live in Southern California because there are a number of such centers in the LA area: Dr. Omid Hamid at The Angeles Clinic and Dr. Steven O'Day at the Hollywood Clinic are highly regarded as are several melanoma specialists at UCLA, the John Wayne Cancer Center and other places. 

Interferon is FDA approved for Stage III melanoma; Yervoy (ipi) is also FDA approved for Stage III "unresectable" (i.e., you have tumors that can not be surgically removed). However, as new treatments are being developed, more and more oncologists are recommending that their Stage III patients consider a clinical trial that admits Stage III patients before making a final decision about your treatment options. 

Before you make a final decision about interferon, I strongly suggest that you get a second opinion from a melanoma specialty center, especially one that conducts a lot of clinical trials. You are fortunate to live in Southern California because there are a number of such centers in the LA area: Dr. Omid Hamid at The Angeles Clinic and Dr. Steven O'Day at the Hollywood Clinic are highly regarded as are several melanoma specialists at UCLA, the John Wayne Cancer Center and other places. 

Interferon is FDA approved for Stage III melanoma; Yervoy (ipi) is also FDA approved for Stage III "unresectable" (i.e., you have tumors that can not be surgically removed). However, as new treatments are being developed, more and more oncologists are recommending that their Stage III patients consider a clinical trial that admits Stage III patients before making a final decision about your treatment options. 

Before you make a final decision about interferon, I strongly suggest that you get a second opinion from a melanoma specialty center, especially one that conducts a lot of clinical trials. You are fortunate to live in Southern California because there are a number of such centers in the LA area: Dr. Omid Hamid at The Angeles Clinic and Dr. Steven O'Day at the Hollywood Clinic are highly regarded as are several melanoma specialists at UCLA, the John Wayne Cancer Center and other places. 

Interferon is FDA approved for Stage III melanoma; Yervoy (ipi) is also FDA approved for Stage III "unresectable" (i.e., you have tumors that can not be surgically removed). However, as new treatments are being developed, more and more oncologists are recommending that their Stage III patients consider a clinical trial that admits Stage III patients before making a final decision about your treatment options. 

I was dx in May, 2000 with stage 3 having micro mets in one sentinel node. I choose a full node dissection and went with Interferon as my treatment. I was 34 at the time with 2 small children and refused to do nothing. My other options at the time were double blinded studies and I wouldn't take the chance I might not get the drug.

I did the entire years treatment starting with the high dose for 1 month and 3 shots a week for the next 11 months. At the end of this May, it will be 14 YEARS since my dx and I have not had a reoccurrence. People will argue was it the Interferon? Was it the node dissection? Was I just one of the lucky ones? I don't know and don't really care. Just happy to be. I was an MRF board member for over 8 years. There were 2 others on the board that went through Interferon at the same time as me (1 for just the month of high dose and the other for the full year). As far as I know, they both continue to be NED.

I certainly did have side effects. I was nauseous for almost the entire year and lost close to 30 lbs. I seemed to have a headache the whole time too. But it was never debilitating. I kept up my normal routine with my 5 and 7 year olds. I continued my job as an accountant 20-30 hours a week. Sure some days were worst than others but it was doable. 

This has always been a struggle for me when I see people bash Interferon. By all means if you tried it and it kicked your butt, chime in. But if you have just "heard" how bad it is, don't try to scare people from the treatment. If there is a treatment that would be a better fit for someone, I would recommend they try it instead of Interferon. However, before I would advocate that someone do NOTHING just because Interferon is so "horrible", try it out. There are plenty of people like me who tolerate it just fine. I like to suggest to those who just want to "watch and wait" try Interferon for the one month of high dose. Some studies show that is really all that is needed. If you feel crappy, it's just one month!

Just thought I would chime in from someone who actually experienced it. I do personally know of people that tried Interferon and had horrible side effects. And some whom it didn't help. As someone else said, the treatment decision is a personal one. Base your decision on the facts you can gather and what will work best for your life style and your risk assessment. 

My last (and I think BEST) piece of advice is once you have chosen your treatment, stand behind it 110% and never look back! You can never win the "would of, could of should of" game. Please feel free to email if I can be of any assistance  [email protected].

Best of luck to you! Take care!

Cara  

I was dx in May, 2000 with stage 3 having micro mets in one sentinel node. I choose a full node dissection and went with Interferon as my treatment. I was 34 at the time with 2 small children and refused to do nothing. My other options at the time were double blinded studies and I wouldn't take the chance I might not get the drug.

I did the entire years treatment starting with the high dose for 1 month and 3 shots a week for the next 11 months. At the end of this May, it will be 14 YEARS since my dx and I have not had a reoccurrence. People will argue was it the Interferon? Was it the node dissection? Was I just one of the lucky ones? I don't know and don't really care. Just happy to be. I was an MRF board member for over 8 years. There were 2 others on the board that went through Interferon at the same time as me (1 for just the month of high dose and the other for the full year). As far as I know, they both continue to be NED.

I certainly did have side effects. I was nauseous for almost the entire year and lost close to 30 lbs. I seemed to have a headache the whole time too. But it was never debilitating. I kept up my normal routine with my 5 and 7 year olds. I continued my job as an accountant 20-30 hours a week. Sure some days were worst than others but it was doable. 

This has always been a struggle for me when I see people bash Interferon. By all means if you tried it and it kicked your butt, chime in. But if you have just "heard" how bad it is, don't try to scare people from the treatment. If there is a treatment that would be a better fit for someone, I would recommend they try it instead of Interferon. However, before I would advocate that someone do NOTHING just because Interferon is so "horrible", try it out. There are plenty of people like me who tolerate it just fine. I like to suggest to those who just want to "watch and wait" try Interferon for the one month of high dose. Some studies show that is really all that is needed. If you feel crappy, it's just one month!

Just thought I would chime in from someone who actually experienced it. I do personally know of people that tried Interferon and had horrible side effects. And some whom it didn't help. As someone else said, the treatment decision is a personal one. Base your decision on the facts you can gather and what will work best for your life style and your risk assessment. 

My last (and I think BEST) piece of advice is once you have chosen your treatment, stand behind it 110% and never look back! You can never win the "would of, could of should of" game. Please feel free to email if I can be of any assistance  [email protected].

Best of luck to you! Take care!

Cara  

I was dx in May, 2000 with stage 3 having micro mets in one sentinel node. I choose a full node dissection and went with Interferon as my treatment. I was 34 at the time with 2 small children and refused to do nothing. My other options at the time were double blinded studies and I wouldn't take the chance I might not get the drug.

I did the entire years treatment starting with the high dose for 1 month and 3 shots a week for the next 11 months. At the end of this May, it will be 14 YEARS since my dx and I have not had a reoccurrence. People will argue was it the Interferon? Was it the node dissection? Was I just one of the lucky ones? I don't know and don't really care. Just happy to be. I was an MRF board member for over 8 years. There were 2 others on the board that went through Interferon at the same time as me (1 for just the month of high dose and the other for the full year). As far as I know, they both continue to be NED.

I certainly did have side effects. I was nauseous for almost the entire year and lost close to 30 lbs. I seemed to have a headache the whole time too. But it was never debilitating. I kept up my normal routine with my 5 and 7 year olds. I continued my job as an accountant 20-30 hours a week. Sure some days were worst than others but it was doable. 

This has always been a struggle for me when I see people bash Interferon. By all means if you tried it and it kicked your butt, chime in. But if you have just "heard" how bad it is, don't try to scare people from the treatment. If there is a treatment that would be a better fit for someone, I would recommend they try it instead of Interferon. However, before I would advocate that someone do NOTHING just because Interferon is so "horrible", try it out. There are plenty of people like me who tolerate it just fine. I like to suggest to those who just want to "watch and wait" try Interferon for the one month of high dose. Some studies show that is really all that is needed. If you feel crappy, it's just one month!

Just thought I would chime in from someone who actually experienced it. I do personally know of people that tried Interferon and had horrible side effects. And some whom it didn't help. As someone else said, the treatment decision is a personal one. Base your decision on the facts you can gather and what will work best for your life style and your risk assessment. 

My last (and I think BEST) piece of advice is once you have chosen your treatment, stand behind it 110% and never look back! You can never win the "would of, could of should of" game. Please feel free to email if I can be of any assistance  [email protected].

Best of luck to you! Take care!

Cara  

Hi Michael,

I was diagnosed with a 3C lesion on my cheek in 2010 and completed the 12 month Interferon protocal (same as planned for you, 4 weeks of IV then self injections).  My experience was exactly as it was described to me.  I could feel like I had a bad flu for a year…and that was exactly how I felt.  I was extremely fatigued, couldn't sit in an un-padded chair for more than 10 minutes without back and body aches starting.  I experienced a loss of appetite and subsequent weight, body aches, headaches, dry mouth and my hair became very thin.  It completey delbilitated me for a year.  I was not able to work or perform most normal activities.  I recall craving my favoite Carrott Cake so one day decided to make it.  What would have normally took me 30-45 minutes to throw together took me 5 hours!  I would do a little then lay down then repeat! 

I discovered this site while going thru the Interferon and at that time there were quite a few people posting who were doing the same thing.  I recall that many of them had very minor side effects and were able to carry on their normal life activities.  Unfortunately, that did not happen for me but many had no issues with it and were able to carry on their normal life activities

Unfortunately, Interferon did not do the trick for me.  In January of this year my annual PET/CT showed t with two MET lesions on my left lung and I am not Stage 4B.  I asked my oncologist what the Interferon did for me and was told that it simply prolonged the MET.  I am currently on IPI with plans to PD-1 if there is no response to the IPI.

Best of luck to you

Cindy

Hi Michael,

I was diagnosed with a 3C lesion on my cheek in 2010 and completed the 12 month Interferon protocal (same as planned for you, 4 weeks of IV then self injections).  My experience was exactly as it was described to me.  I could feel like I had a bad flu for a year…and that was exactly how I felt.  I was extremely fatigued, couldn't sit in an un-padded chair for more than 10 minutes without back and body aches starting.  I experienced a loss of appetite and subsequent weight, body aches, headaches, dry mouth and my hair became very thin.  It completey delbilitated me for a year.  I was not able to work or perform most normal activities.  I recall craving my favoite Carrott Cake so one day decided to make it.  What would have normally took me 30-45 minutes to throw together took me 5 hours!  I would do a little then lay down then repeat! 

I discovered this site while going thru the Interferon and at that time there were quite a few people posting who were doing the same thing.  I recall that many of them had very minor side effects and were able to carry on their normal life activities.  Unfortunately, that did not happen for me but many had no issues with it and were able to carry on their normal life activities

Unfortunately, Interferon did not do the trick for me.  In January of this year my annual PET/CT showed t with two MET lesions on my left lung and I am not Stage 4B.  I asked my oncologist what the Interferon did for me and was told that it simply prolonged the MET.  I am currently on IPI with plans to PD-1 if there is no response to the IPI.

Best of luck to you

Cindy

Hi Michael,

I was diagnosed with a 3C lesion on my cheek in 2010 and completed the 12 month Interferon protocal (same as planned for you, 4 weeks of IV then self injections).  My experience was exactly as it was described to me.  I could feel like I had a bad flu for a year…and that was exactly how I felt.  I was extremely fatigued, couldn't sit in an un-padded chair for more than 10 minutes without back and body aches starting.  I experienced a loss of appetite and subsequent weight, body aches, headaches, dry mouth and my hair became very thin.  It completey delbilitated me for a year.  I was not able to work or perform most normal activities.  I recall craving my favoite Carrott Cake so one day decided to make it.  What would have normally took me 30-45 minutes to throw together took me 5 hours!  I would do a little then lay down then repeat! 

I discovered this site while going thru the Interferon and at that time there were quite a few people posting who were doing the same thing.  I recall that many of them had very minor side effects and were able to carry on their normal life activities.  Unfortunately, that did not happen for me but many had no issues with it and were able to carry on their normal life activities

Unfortunately, Interferon did not do the trick for me.  In January of this year my annual PET/CT showed t with two MET lesions on my left lung and I am not Stage 4B.  I asked my oncologist what the Interferon did for me and was told that it simply prolonged the MET.  I am currently on IPI with plans to PD-1 if there is no response to the IPI.

Best of luck to you

Cindy

Michael,

I did the HD/LD protocol from Dec 12 through Dec 13.  I probably had it better than most and it was still a pretty tough year.  I would not count on working the first month.  After the first month it is possible but a job where you are on your feet all day is going to be tough.  I went from about 178 down to about 140 during my year (I'm 5'9").  Unfortunately I advanced to stage IV last May.

You may want to know would I do it again?  That's a tough question and like you hear repeated over and over, it's a personal decision.  I actually had enrolled in the IPI vs. Interferon trial in hope of getting IPI but was randomized into the interferon arm.  There were a few things that eventually convinced me to go with the interferon.  I figured it couldn't hurt to try it and I could always stop if the side effects got too bad.  The "couldn't hurt to try it" is debatable because some people complain of longterm mental fogginess and I had a nurse from NIH tell me it decreases your bone density.  In my own research I concluded from the data there wasn't enough benefit in regards to longterm survival to warrant the toxicities of the drug but the data did seem to indicate interferon could delay recurrence and to me that was enough to warrant the toxicities.  Delayed recurrence may seem insignificant but in this day and age of amazing advancements in treatments you never know what the difference even a few months delay in recurrence could mean in treatments available.  Lastly, at the time of my decision I had a 1 year old and a 3 year old.  I was going to do everything in my power to fight this beast.  I just could stand the thought of being on my death bed and wondering what would have happened if I had tried interferon. 

Again those were all personal thoughts of why I went with interferon.  I will leave you with one more thought just to confuse you more.  There seems to be a stigma with "watch and wait" or "doing nothing".  I don't think you should feel that way at all if you decide not to do interferon.  There are a multitude of things you can do involving nutrition, excercise, supplements, psychological, and spiritual that can help you as much if not more than interferon can and rather than make you feel like crap will make you feel better than you ever have.  If you do decide to go with interferon please stay active on the board and I will definitely pass on some tips that can help you get through the year.  Best of luck to you.

Brian

Michael,

I did the HD/LD protocol from Dec 12 through Dec 13.  I probably had it better than most and it was still a pretty tough year.  I would not count on working the first month.  After the first month it is possible but a job where you are on your feet all day is going to be tough.  I went from about 178 down to about 140 during my year (I'm 5'9").  Unfortunately I advanced to stage IV last May.

You may want to know would I do it again?  That's a tough question and like you hear repeated over and over, it's a personal decision.  I actually had enrolled in the IPI vs. Interferon trial in hope of getting IPI but was randomized into the interferon arm.  There were a few things that eventually convinced me to go with the interferon.  I figured it couldn't hurt to try it and I could always stop if the side effects got too bad.  The "couldn't hurt to try it" is debatable because some people complain of longterm mental fogginess and I had a nurse from NIH tell me it decreases your bone density.  In my own research I concluded from the data there wasn't enough benefit in regards to longterm survival to warrant the toxicities of the drug but the data did seem to indicate interferon could delay recurrence and to me that was enough to warrant the toxicities.  Delayed recurrence may seem insignificant but in this day and age of amazing advancements in treatments you never know what the difference even a few months delay in recurrence could mean in treatments available.  Lastly, at the time of my decision I had a 1 year old and a 3 year old.  I was going to do everything in my power to fight this beast.  I just could stand the thought of being on my death bed and wondering what would have happened if I had tried interferon. 

Again those were all personal thoughts of why I went with interferon.  I will leave you with one more thought just to confuse you more.  There seems to be a stigma with "watch and wait" or "doing nothing".  I don't think you should feel that way at all if you decide not to do interferon.  There are a multitude of things you can do involving nutrition, excercise, supplements, psychological, and spiritual that can help you as much if not more than interferon can and rather than make you feel like crap will make you feel better than you ever have.  If you do decide to go with interferon please stay active on the board and I will definitely pass on some tips that can help you get through the year.  Best of luck to you.

Brian

Michael,

I did the HD/LD protocol from Dec 12 through Dec 13.  I probably had it better than most and it was still a pretty tough year.  I would not count on working the first month.  After the first month it is possible but a job where you are on your feet all day is going to be tough.  I went from about 178 down to about 140 during my year (I'm 5'9").  Unfortunately I advanced to stage IV last May.

You may want to know would I do it again?  That's a tough question and like you hear repeated over and over, it's a personal decision.  I actually had enrolled in the IPI vs. Interferon trial in hope of getting IPI but was randomized into the interferon arm.  There were a few things that eventually convinced me to go with the interferon.  I figured it couldn't hurt to try it and I could always stop if the side effects got too bad.  The "couldn't hurt to try it" is debatable because some people complain of longterm mental fogginess and I had a nurse from NIH tell me it decreases your bone density.  In my own research I concluded from the data there wasn't enough benefit in regards to longterm survival to warrant the toxicities of the drug but the data did seem to indicate interferon could delay recurrence and to me that was enough to warrant the toxicities.  Delayed recurrence may seem insignificant but in this day and age of amazing advancements in treatments you never know what the difference even a few months delay in recurrence could mean in treatments available.  Lastly, at the time of my decision I had a 1 year old and a 3 year old.  I was going to do everything in my power to fight this beast.  I just could stand the thought of being on my death bed and wondering what would have happened if I had tried interferon. 

Again those were all personal thoughts of why I went with interferon.  I will leave you with one more thought just to confuse you more.  There seems to be a stigma with "watch and wait" or "doing nothing".  I don't think you should feel that way at all if you decide not to do interferon.  There are a multitude of things you can do involving nutrition, excercise, supplements, psychological, and spiritual that can help you as much if not more than interferon can and rather than make you feel like crap will make you feel better than you ever have.  If you do decide to go with interferon please stay active on the board and I will definitely pass on some tips that can help you get through the year.  Best of luck to you.

Brian

Hi Mike,

I was diagnosed in Dec 2010 stage 2b, did the SNL and WLE.  The only treatment offered was interferon, one month of infusions followed by 11 months of injections.  I took it.  In Dec 2011 I had clean scans, in January 2013 I was stage 4.

i never second guess my choice.  It was hard, but manageable.  For the first month I worked in the morning, had the infusion in the afternoon then went home and went to bed.  I missed a couple of days of work but that was more to stay home and cry as I tried to wrap my head around the disease.  The first night of the shots was the worst, chills, sweats, aches and fever.

I did take s/t disability for six weeks thinking if I could rest I would feel better. Wrong.  It just made me depressed sitting at home, er laying in bed all day.

i finally found a routine that worked for me and my employer went along with it.

Shots on Mon, We'd, Fri at 8 pm – sometimes Saturday night depending on weekend plans.  I'd take Tylenol, Benadryl  before every shot then hop into bed.  On Tuesday and Thursday I'd go in to work at noon and work a half day.  This way I was able to work 32 hours pretty comfortably and keep my full time benefits.

i have two daughters and a husband.  My girls were teens at the time and all I could think of was that I wanted to be around for high school graduations, college and all that life holds for them.

I don't regret my choice.  I'm still here.  Did it help me?  I'll never really know the answer to that, but I do know that I could not, would not, sit back and watch and wait.  But as others have said its a personal choice 😉

i will also note that I did not lose any weight, my taste buds certainly went thru an overhaul but I found things with fat, like cake, tasted the best.

as far as memory issues, yup I had a few.  But I'm happy to say once I finished the year and stopped interferon things popped right back into my head.

whatever you decide I wish you the best.

Holly

Hi Mike,

I was diagnosed in Dec 2010 stage 2b, did the SNL and WLE.  The only treatment offered was interferon, one month of infusions followed by 11 months of injections.  I took it.  In Dec 2011 I had clean scans, in January 2013 I was stage 4.

i never second guess my choice.  It was hard, but manageable.  For the first month I worked in the morning, had the infusion in the afternoon then went home and went to bed.  I missed a couple of days of work but that was more to stay home and cry as I tried to wrap my head around the disease.  The first night of the shots was the worst, chills, sweats, aches and fever.

I did take s/t disability for six weeks thinking if I could rest I would feel better. Wrong.  It just made me depressed sitting at home, er laying in bed all day.

i finally found a routine that worked for me and my employer went along with it.

Shots on Mon, We'd, Fri at 8 pm – sometimes Saturday night depending on weekend plans.  I'd take Tylenol, Benadryl  before every shot then hop into bed.  On Tuesday and Thursday I'd go in to work at noon and work a half day.  This way I was able to work 32 hours pretty comfortably and keep my full time benefits.

i have two daughters and a husband.  My girls were teens at the time and all I could think of was that I wanted to be around for high school graduations, college and all that life holds for them.

I don't regret my choice.  I'm still here.  Did it help me?  I'll never really know the answer to that, but I do know that I could not, would not, sit back and watch and wait.  But as others have said its a personal choice 😉

i will also note that I did not lose any weight, my taste buds certainly went thru an overhaul but I found things with fat, like cake, tasted the best.

as far as memory issues, yup I had a few.  But I'm happy to say once I finished the year and stopped interferon things popped right back into my head.

whatever you decide I wish you the best.

Holly

Hi Mike,

I was diagnosed in Dec 2010 stage 2b, did the SNL and WLE.  The only treatment offered was interferon, one month of infusions followed by 11 months of injections.  I took it.  In Dec 2011 I had clean scans, in January 2013 I was stage 4.

i never second guess my choice.  It was hard, but manageable.  For the first month I worked in the morning, had the infusion in the afternoon then went home and went to bed.  I missed a couple of days of work but that was more to stay home and cry as I tried to wrap my head around the disease.  The first night of the shots was the worst, chills, sweats, aches and fever.

I did take s/t disability for six weeks thinking if I could rest I would feel better. Wrong.  It just made me depressed sitting at home, er laying in bed all day.

i finally found a routine that worked for me and my employer went along with it.

Shots on Mon, We'd, Fri at 8 pm – sometimes Saturday night depending on weekend plans.  I'd take Tylenol, Benadryl  before every shot then hop into bed.  On Tuesday and Thursday I'd go in to work at noon and work a half day.  This way I was able to work 32 hours pretty comfortably and keep my full time benefits.

i have two daughters and a husband.  My girls were teens at the time and all I could think of was that I wanted to be around for high school graduations, college and all that life holds for them.

I don't regret my choice.  I'm still here.  Did it help me?  I'll never really know the answer to that, but I do know that I could not, would not, sit back and watch and wait.  But as others have said its a personal choice 😉

i will also note that I did not lose any weight, my taste buds certainly went thru an overhaul but I found things with fat, like cake, tasted the best.

as far as memory issues, yup I had a few.  But I'm happy to say once I finished the year and stopped interferon things popped right back into my head.

whatever you decide I wish you the best.

Holly

Sometimes I get really angry when people ask a question about a treatment and others immediately jump all over them and tell them their doctor isn't up to date or they're just plain wrong. That's their opinion, not a fact. They get to make their own choices, but this is YOUR choice. The only thing anyone should be posting is "Yes, I tried that and here's my experience" or "No, I decided against it and here's why". NO ONE should be telling you what to do- that's between you and your doctor(s) and NO ONE should be telling you you're wrong for considering it. This board is supposed to be supportive, not dismissive or condemning!

You're stage 3a and there aren't many options. I was 3b at diagnosis and was given the same choice. I went with the full year of interferon and I am NOT, I repeat NOT sorry. Yes, it was tough, especially the first month of high dose, but it eases up a lot after that and my most common side effect was fevers. I took the injections at night so I could sleep through most of the worst of it. I felt frustrated with the lack of energy for a while, but readjusted to my new, temporary "normal". Since then yes, I have progressed, but I had a very aggressive primary tumor and it wasnt' really that big of a surprise. Did interferon help? I will never know, but I'm still not sorry I went for it because now I know I did everything I could at every stage of my battle. 

and FYI- both my doctors and myself are completely "up to date". I'm a young medical proffesional and wouldn't tolerate anything less. 

You said you were on your feet all day for your job and so were thinking of cutting back to part time. If you decide to go with interferon, I think you'll need the full first month (and maybe an extra week at the end) completely off. That month is tough- I didn't really start getting hit until the second week, but everyone rects differently so I would plan on taking that month off. It's a definite possibility to do some work after that, but again, everyone's different. You can arrange your dosing schedule so that you feel better on the days you want to work. I found that I didn't feel great the morning after I took a dose, but by afternoon was starting to feel ok and since they're every other day, the day leading up to the next dose I felt relatively normal. For example, If I took a dose on Mon, I didn't feel great Tues morning, but by afternoon was starting to feel ok. Then all day Wed I'd feel pretty good, until bed time when I took the next dose.

This is your decision: ignore anyone trying to tell you what to do. Weigh your options with your doctor and your family, and make the best decision for YOU; not for someone else. Then move forward and never look back.

Sometimes I get really angry when people ask a question about a treatment and others immediately jump all over them and tell them their doctor isn't up to date or they're just plain wrong. That's their opinion, not a fact. They get to make their own choices, but this is YOUR choice. The only thing anyone should be posting is "Yes, I tried that and here's my experience" or "No, I decided against it and here's why". NO ONE should be telling you what to do- that's between you and your doctor(s) and NO ONE should be telling you you're wrong for considering it. This board is supposed to be supportive, not dismissive or condemning!

You're stage 3a and there aren't many options. I was 3b at diagnosis and was given the same choice. I went with the full year of interferon and I am NOT, I repeat NOT sorry. Yes, it was tough, especially the first month of high dose, but it eases up a lot after that and my most common side effect was fevers. I took the injections at night so I could sleep through most of the worst of it. I felt frustrated with the lack of energy for a while, but readjusted to my new, temporary "normal". Since then yes, I have progressed, but I had a very aggressive primary tumor and it wasnt' really that big of a surprise. Did interferon help? I will never know, but I'm still not sorry I went for it because now I know I did everything I could at every stage of my battle. 

and FYI- both my doctors and myself are completely "up to date". I'm a young medical proffesional and wouldn't tolerate anything less. 

You said you were on your feet all day for your job and so were thinking of cutting back to part time. If you decide to go with interferon, I think you'll need the full first month (and maybe an extra week at the end) completely off. That month is tough- I didn't really start getting hit until the second week, but everyone rects differently so I would plan on taking that month off. It's a definite possibility to do some work after that, but again, everyone's different. You can arrange your dosing schedule so that you feel better on the days you want to work. I found that I didn't feel great the morning after I took a dose, but by afternoon was starting to feel ok and since they're every other day, the day leading up to the next dose I felt relatively normal. For example, If I took a dose on Mon, I didn't feel great Tues morning, but by afternoon was starting to feel ok. Then all day Wed I'd feel pretty good, until bed time when I took the next dose.

This is your decision: ignore anyone trying to tell you what to do. Weigh your options with your doctor and your family, and make the best decision for YOU; not for someone else. Then move forward and never look back.

Sometimes I get really angry when people ask a question about a treatment and others immediately jump all over them and tell them their doctor isn't up to date or they're just plain wrong. That's their opinion, not a fact. They get to make their own choices, but this is YOUR choice. The only thing anyone should be posting is "Yes, I tried that and here's my experience" or "No, I decided against it and here's why". NO ONE should be telling you what to do- that's between you and your doctor(s) and NO ONE should be telling you you're wrong for considering it. This board is supposed to be supportive, not dismissive or condemning!

You're stage 3a and there aren't many options. I was 3b at diagnosis and was given the same choice. I went with the full year of interferon and I am NOT, I repeat NOT sorry. Yes, it was tough, especially the first month of high dose, but it eases up a lot after that and my most common side effect was fevers. I took the injections at night so I could sleep through most of the worst of it. I felt frustrated with the lack of energy for a while, but readjusted to my new, temporary "normal". Since then yes, I have progressed, but I had a very aggressive primary tumor and it wasnt' really that big of a surprise. Did interferon help? I will never know, but I'm still not sorry I went for it because now I know I did everything I could at every stage of my battle. 

and FYI- both my doctors and myself are completely "up to date". I'm a young medical proffesional and wouldn't tolerate anything less. 

You said you were on your feet all day for your job and so were thinking of cutting back to part time. If you decide to go with interferon, I think you'll need the full first month (and maybe an extra week at the end) completely off. That month is tough- I didn't really start getting hit until the second week, but everyone rects differently so I would plan on taking that month off. It's a definite possibility to do some work after that, but again, everyone's different. You can arrange your dosing schedule so that you feel better on the days you want to work. I found that I didn't feel great the morning after I took a dose, but by afternoon was starting to feel ok and since they're every other day, the day leading up to the next dose I felt relatively normal. For example, If I took a dose on Mon, I didn't feel great Tues morning, but by afternoon was starting to feel ok. Then all day Wed I'd feel pretty good, until bed time when I took the next dose.

This is your decision: ignore anyone trying to tell you what to do. Weigh your options with your doctor and your family, and make the best decision for YOU; not for someone else. Then move forward and never look back.

I did the Interferon regimine after I was first diagnosed as Stage III in 2010.  Did eight weeks of high-dose IV's followed by (what was supposed to be) 12 months of self injections through 2011 and into 2012.  I had to lay off the injections several times due to high liver enzymes and eventually discontinued the Interferon altogether after the 7th month.

I had flu-like symptoms pretty much the entire time, especially when I was on the IV's.  I just went home and slept for most of the time.  After that initial induction phase, I was on a 7-day regimine of 5 days with shots and two days off.   When I first took my shots on Monday mornings, I always ran a fever of at least 100 – 101°.  Each successive day, my temperature would spike a little less, until Friday, when I hardly felt feverish at all.  Once I got several weeks into the treatment the fever would spike slightly less, but I never took shots without having a fever.  My doctor had me take Tylenol an hour before the injections, but I don't think it helped all that much.

My melanoma returned about 10 months after I stopped the Interferon.  I'll never know if it really made a difference – maybe it bought me some time?  How would one really know?  Statistically speaking, Interferon effectiveness as an adjuvant therapy is pretty low.

Knowing what I know now, I would at least ask about the availability of a clinical trial for Stage 3 patients using one of the newer immunotherapy drugs such as ipilumimab.  Your doctor also should be testing your tumor for genetic markers such as the BRAF that might point to treating with a specific drug or class of drugs, especially down the road if your situation does not improve or worsens.

Of course, everybody is different and there is no 100% right or wrong answer.  These are things you have to weigh with your doctor and your family and decide for yourself.

Wishing you the best of luck in your journey,

bj63

I did the Interferon regimine after I was first diagnosed as Stage III in 2010.  Did eight weeks of high-dose IV's followed by (what was supposed to be) 12 months of self injections through 2011 and into 2012.  I had to lay off the injections several times due to high liver enzymes and eventually discontinued the Interferon altogether after the 7th month.

I had flu-like symptoms pretty much the entire time, especially when I was on the IV's.  I just went home and slept for most of the time.  After that initial induction phase, I was on a 7-day regimine of 5 days with shots and two days off.   When I first took my shots on Monday mornings, I always ran a fever of at least 100 – 101°.  Each successive day, my temperature would spike a little less, until Friday, when I hardly felt feverish at all.  Once I got several weeks into the treatment the fever would spike slightly less, but I never took shots without having a fever.  My doctor had me take Tylenol an hour before the injections, but I don't think it helped all that much.

My melanoma returned about 10 months after I stopped the Interferon.  I'll never know if it really made a difference – maybe it bought me some time?  How would one really know?  Statistically speaking, Interferon effectiveness as an adjuvant therapy is pretty low.

Knowing what I know now, I would at least ask about the availability of a clinical trial for Stage 3 patients using one of the newer immunotherapy drugs such as ipilumimab.  Your doctor also should be testing your tumor for genetic markers such as the BRAF that might point to treating with a specific drug or class of drugs, especially down the road if your situation does not improve or worsens.

Of course, everybody is different and there is no 100% right or wrong answer.  These are things you have to weigh with your doctor and your family and decide for yourself.

Wishing you the best of luck in your journey,

bj63

I did the Interferon regimine after I was first diagnosed as Stage III in 2010.  Did eight weeks of high-dose IV's followed by (what was supposed to be) 12 months of self injections through 2011 and into 2012.  I had to lay off the injections several times due to high liver enzymes and eventually discontinued the Interferon altogether after the 7th month.

I had flu-like symptoms pretty much the entire time, especially when I was on the IV's.  I just went home and slept for most of the time.  After that initial induction phase, I was on a 7-day regimine of 5 days with shots and two days off.   When I first took my shots on Monday mornings, I always ran a fever of at least 100 – 101°.  Each successive day, my temperature would spike a little less, until Friday, when I hardly felt feverish at all.  Once I got several weeks into the treatment the fever would spike slightly less, but I never took shots without having a fever.  My doctor had me take Tylenol an hour before the injections, but I don't think it helped all that much.

My melanoma returned about 10 months after I stopped the Interferon.  I'll never know if it really made a difference – maybe it bought me some time?  How would one really know?  Statistically speaking, Interferon effectiveness as an adjuvant therapy is pretty low.

Knowing what I know now, I would at least ask about the availability of a clinical trial for Stage 3 patients using one of the newer immunotherapy drugs such as ipilumimab.  Your doctor also should be testing your tumor for genetic markers such as the BRAF that might point to treating with a specific drug or class of drugs, especially down the road if your situation does not improve or worsens.

Of course, everybody is different and there is no 100% right or wrong answer.  These are things you have to weigh with your doctor and your family and decide for yourself.

Wishing you the best of luck in your journey,

bj63

Hi Michael. I am stage 3a, and I will be starting my course of interferon-a this Monday, so it sounds like we are in very similar situations. (Before anyone on this post yells at me about my decision; I am being treated at a world renowned cancer hospital with melanoma specialists, and this course of treatment was recommended.) If you decide to do the treatment, and you uncover a good technique for dealing with the side effects of the treatment, please pass the the information along. I will certainly be happy to do the same. I also have a job that has long hours and is extremely physically demanding, so any survival strategies would be appreciated. Best of luck to you in your decision, and treatment (if that is your choice). 

Hi Michael. I am stage 3a, and I will be starting my course of interferon-a this Monday, so it sounds like we are in very similar situations. (Before anyone on this post yells at me about my decision; I am being treated at a world renowned cancer hospital with melanoma specialists, and this course of treatment was recommended.) If you decide to do the treatment, and you uncover a good technique for dealing with the side effects of the treatment, please pass the the information along. I will certainly be happy to do the same. I also have a job that has long hours and is extremely physically demanding, so any survival strategies would be appreciated. Best of luck to you in your decision, and treatment (if that is your choice). 

Hi Michael. I am stage 3a, and I will be starting my course of interferon-a this Monday, so it sounds like we are in very similar situations. (Before anyone on this post yells at me about my decision; I am being treated at a world renowned cancer hospital with melanoma specialists, and this course of treatment was recommended.) If you decide to do the treatment, and you uncover a good technique for dealing with the side effects of the treatment, please pass the the information along. I will certainly be happy to do the same. I also have a job that has long hours and is extremely physically demanding, so any survival strategies would be appreciated. Best of luck to you in your decision, and treatment (if that is your choice).