For my son I think the worst was fatigue, headaches at first, loss of appetite ( I made him drink lots of boost) 

That being said, he went back to school during the interferon year and finished up his senior year of college.

He did not have any hair loss.

good luck to you!

For my son I think the worst was fatigue, headaches at first, loss of appetite ( I made him drink lots of boost) 

That being said, he went back to school during the interferon year and finished up his senior year of college.

He did not have any hair loss.

good luck to you!

For my son I think the worst was fatigue, headaches at first, loss of appetite ( I made him drink lots of boost) 

That being said, he went back to school during the interferon year and finished up his senior year of college.

He did not have any hair loss.

good luck to you!

This was written before Yervoy was a adjuvant treatment, but it does discuss risks/benefits and some of the side effects of Interferon.  The side effects are definitely variable — if you do a search on this site you'll find everything from mild to debilitating.  The thing is, no one knows how you will react until you take the drug.

Helping Melanoma Patients Decide Whether to Choose Adjuvant High-Dose Interferon-α2b

Abstract

High-dose interferon-α2b is a U.S. Food and Drug Administration–approved adjuvant treatment for stage III melanoma, and yet, because of its limited efficacy and well-known toxicity, it is not universally accepted by patients and oncologists. In this paper, we evaluate the benefits and risks of adjuvant high-dose interferon-α2b and try to provide a framework to help oncologists guide patients trying to decide whether to undergo adjuvant high-dose interferon therapy.

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

This was written before Yervoy was a adjuvant treatment, but it does discuss risks/benefits and some of the side effects of Interferon.  The side effects are definitely variable — if you do a search on this site you'll find everything from mild to debilitating.  The thing is, no one knows how you will react until you take the drug.

Helping Melanoma Patients Decide Whether to Choose Adjuvant High-Dose Interferon-α2b

Abstract

High-dose interferon-α2b is a U.S. Food and Drug Administration–approved adjuvant treatment for stage III melanoma, and yet, because of its limited efficacy and well-known toxicity, it is not universally accepted by patients and oncologists. In this paper, we evaluate the benefits and risks of adjuvant high-dose interferon-α2b and try to provide a framework to help oncologists guide patients trying to decide whether to undergo adjuvant high-dose interferon therapy.

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

This was written before Yervoy was a adjuvant treatment, but it does discuss risks/benefits and some of the side effects of Interferon.  The side effects are definitely variable — if you do a search on this site you'll find everything from mild to debilitating.  The thing is, no one knows how you will react until you take the drug.

Helping Melanoma Patients Decide Whether to Choose Adjuvant High-Dose Interferon-α2b

Abstract

High-dose interferon-α2b is a U.S. Food and Drug Administration–approved adjuvant treatment for stage III melanoma, and yet, because of its limited efficacy and well-known toxicity, it is not universally accepted by patients and oncologists. In this paper, we evaluate the benefits and risks of adjuvant high-dose interferon-α2b and try to provide a framework to help oncologists guide patients trying to decide whether to undergo adjuvant high-dose interferon therapy.

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

2012/2013 I did Interferon and you are not a fool at all, everyone does what feels/seems like the right path for them personally.

The greatest of side effects for me were fatigue, headaches and some fever and chills.   I thought it wasn't so bad overall when you consdier the length of time you are on it and realize it could have been soooo very much worse.    Just be sure to rest when you really feel you need it and take care of you.   Drink lots of water.

My oncologist had said the only reason one might lose their hari on Interferon is due to a very high level of stress.    I did experience some thinning of my hair but no true hair loss.   Thankfully with a great team around me, stress was kept to as much a minimum as possible.   I hope you have a good circle of support around you and you will do fine.    Of course keep in mind everyone is different so Interferon could present different side effects for you personally but overall as long as you are drinking lots of water, getting plenty of rest adn generally being kind to you and your body you will do well.

Take care and let me know what you decide and how things are going for you.

Cathy 

Stage 3

2012/2013 I did Interferon and you are not a fool at all, everyone does what feels/seems like the right path for them personally.

The greatest of side effects for me were fatigue, headaches and some fever and chills.   I thought it wasn't so bad overall when you consdier the length of time you are on it and realize it could have been soooo very much worse.    Just be sure to rest when you really feel you need it and take care of you.   Drink lots of water.

My oncologist had said the only reason one might lose their hari on Interferon is due to a very high level of stress.    I did experience some thinning of my hair but no true hair loss.   Thankfully with a great team around me, stress was kept to as much a minimum as possible.   I hope you have a good circle of support around you and you will do fine.    Of course keep in mind everyone is different so Interferon could present different side effects for you personally but overall as long as you are drinking lots of water, getting plenty of rest adn generally being kind to you and your body you will do well.

Take care and let me know what you decide and how things are going for you.

Cathy 

Stage 3

2012/2013 I did Interferon and you are not a fool at all, everyone does what feels/seems like the right path for them personally.

The greatest of side effects for me were fatigue, headaches and some fever and chills.   I thought it wasn't so bad overall when you consdier the length of time you are on it and realize it could have been soooo very much worse.    Just be sure to rest when you really feel you need it and take care of you.   Drink lots of water.

My oncologist had said the only reason one might lose their hari on Interferon is due to a very high level of stress.    I did experience some thinning of my hair but no true hair loss.   Thankfully with a great team around me, stress was kept to as much a minimum as possible.   I hope you have a good circle of support around you and you will do fine.    Of course keep in mind everyone is different so Interferon could present different side effects for you personally but overall as long as you are drinking lots of water, getting plenty of rest adn generally being kind to you and your body you will do well.

Take care and let me know what you decide and how things are going for you.

Cathy 

Stage 3

Annoymous –  reposting this here in my response to Wally's question above about the management of Interferon.  I just finished my last Interferon shot 2 weeks ago…so all of this is fresh in my mind.  BTW…I had a really good holiday week…feeling the best I have felt in a very long time…so I want to let you know if you go this path…the side effects that I experienced had a very short half-life of less than a week.

I am a stage 3A and was looking for adjunctive therapy (prevention more than cure).  In 2014, Interferon was the only real viable alternative for 3A.  The main benefit was to delay reoccurrence by 6-12 months…it is not a cure by any imagination….but I am currently NED so I am thinking it was the worth the effort.

But let me answer your question directly.

The normal delivery in month 1 is 40 units done via IV at the clinic (4 weeks x 5 days).  I made 19 of the 20 IVs that were prescribed but let me tell you it was a real challenge.  The worst is the first 3-5 days where I experienced high fever (103), body aches, shakes, lost appetite (total of probably 20 different symptoms).  But over the course of the month the violent nature of the first week subsided and then the real issue became fatigue.  (I still worked about 35 hours a week from home…the rest of the time was at the clinic and sleeping)  i would say my body strength was down to 40-50% by month end barely able to walk into the clinic.

Once you finish that they will give your body 2 weeks to recover and then you start the home shots at 20 units 3 times per week.  The best way to describe it as "Super Blah days", "Blah days", and depending on the timing I typical got to have a "not so Blah day" once per week.  My wife administered the shots which were not fun but really not a big deal in the scheme of things.

So here is what I experienced for those 11 months.

Shot at 7:30 PM…started feeling it at about 8:30 PM (take with Tylenol) as I went to bed.  Was able to sleep until sometime around 1-3 AM when the fever began to spike (only about 100-101 most shots).  Really restless sleeping until about 6:00 AM when fever was typically down to 99-100.  At that point energy level is probably 60-70%…but you will recover to 70-80% by mid-day.  Appetite is down and generally you feel crappy but you can function.  I worked from home and then traveled about 1-2 times per month for 2-3 days per week.  I timed my shots and trips so that nobody saw me on Super Blah days and occasional I had work from bed days.  I often would skip a shot (maybe 1-2 per month) if I had to make a 3 day trip.

A couple of other thoughts….I took drug holidays (which my doctor recommended) which required me to stop the drug 6-7 days before a beach vacation (so not too much activity).  By day 7-8 my appetite was back and I was back to almost 85-90% and by day 10 that I was feeling really good and eating, drinking, and having fairly active fun again.   The bad news is that when you come back home after 14 total days off of the shots…you are going to hate that night…back to 103 fever, real body shakes followed by a Super Super Blah day.

Sometime about 2/3rds of the way through the year, I reduced my shots to 15 units (so by about 25% of full strength) and that really helped on the depth of the Super Blah days.

So my net…you can do Interferon with a bit of common sense management.

Now back to "should you even do this"….I would really make sure you take a serious look at all of the new drugs that became available over the past year.  For stage 4 patients (and even new options for stage 3) you have so many better choices than Interferon….but your specific situation may prevent you from taking them.  BUT ABSOLUTELY MAKE SURE YOU ARE TALKING TO A MELANOMA specialist…not just an oncologist. (there are several topics relating to the IPI/Yervoy for adjunctive Stage 3…make sure you read those going back 3-4 week.)

Feel free to message me directly…and I can answer any additional questions you might have about managing the side effects if you do the Interferon path.

Best wishes….Michel

Annoymous –  reposting this here in my response to Wally's question above about the management of Interferon.  I just finished my last Interferon shot 2 weeks ago…so all of this is fresh in my mind.  BTW…I had a really good holiday week…feeling the best I have felt in a very long time…so I want to let you know if you go this path…the side effects that I experienced had a very short half-life of less than a week.

I am a stage 3A and was looking for adjunctive therapy (prevention more than cure).  In 2014, Interferon was the only real viable alternative for 3A.  The main benefit was to delay reoccurrence by 6-12 months…it is not a cure by any imagination….but I am currently NED so I am thinking it was the worth the effort.

But let me answer your question directly.

The normal delivery in month 1 is 40 units done via IV at the clinic (4 weeks x 5 days).  I made 19 of the 20 IVs that were prescribed but let me tell you it was a real challenge.  The worst is the first 3-5 days where I experienced high fever (103), body aches, shakes, lost appetite (total of probably 20 different symptoms).  But over the course of the month the violent nature of the first week subsided and then the real issue became fatigue.  (I still worked about 35 hours a week from home…the rest of the time was at the clinic and sleeping)  i would say my body strength was down to 40-50% by month end barely able to walk into the clinic.

Once you finish that they will give your body 2 weeks to recover and then you start the home shots at 20 units 3 times per week.  The best way to describe it as "Super Blah days", "Blah days", and depending on the timing I typical got to have a "not so Blah day" once per week.  My wife administered the shots which were not fun but really not a big deal in the scheme of things.

So here is what I experienced for those 11 months.

Shot at 7:30 PM…started feeling it at about 8:30 PM (take with Tylenol) as I went to bed.  Was able to sleep until sometime around 1-3 AM when the fever began to spike (only about 100-101 most shots).  Really restless sleeping until about 6:00 AM when fever was typically down to 99-100.  At that point energy level is probably 60-70%…but you will recover to 70-80% by mid-day.  Appetite is down and generally you feel crappy but you can function.  I worked from home and then traveled about 1-2 times per month for 2-3 days per week.  I timed my shots and trips so that nobody saw me on Super Blah days and occasional I had work from bed days.  I often would skip a shot (maybe 1-2 per month) if I had to make a 3 day trip.

A couple of other thoughts….I took drug holidays (which my doctor recommended) which required me to stop the drug 6-7 days before a beach vacation (so not too much activity).  By day 7-8 my appetite was back and I was back to almost 85-90% and by day 10 that I was feeling really good and eating, drinking, and having fairly active fun again.   The bad news is that when you come back home after 14 total days off of the shots…you are going to hate that night…back to 103 fever, real body shakes followed by a Super Super Blah day.

Sometime about 2/3rds of the way through the year, I reduced my shots to 15 units (so by about 25% of full strength) and that really helped on the depth of the Super Blah days.

So my net…you can do Interferon with a bit of common sense management.

Now back to "should you even do this"….I would really make sure you take a serious look at all of the new drugs that became available over the past year.  For stage 4 patients (and even new options for stage 3) you have so many better choices than Interferon….but your specific situation may prevent you from taking them.  BUT ABSOLUTELY MAKE SURE YOU ARE TALKING TO A MELANOMA specialist…not just an oncologist. (there are several topics relating to the IPI/Yervoy for adjunctive Stage 3…make sure you read those going back 3-4 week.)

Feel free to message me directly…and I can answer any additional questions you might have about managing the side effects if you do the Interferon path.

Best wishes….Michel

Annoymous –  reposting this here in my response to Wally's question above about the management of Interferon.  I just finished my last Interferon shot 2 weeks ago…so all of this is fresh in my mind.  BTW…I had a really good holiday week…feeling the best I have felt in a very long time…so I want to let you know if you go this path…the side effects that I experienced had a very short half-life of less than a week.

I am a stage 3A and was looking for adjunctive therapy (prevention more than cure).  In 2014, Interferon was the only real viable alternative for 3A.  The main benefit was to delay reoccurrence by 6-12 months…it is not a cure by any imagination….but I am currently NED so I am thinking it was the worth the effort.

But let me answer your question directly.

The normal delivery in month 1 is 40 units done via IV at the clinic (4 weeks x 5 days).  I made 19 of the 20 IVs that were prescribed but let me tell you it was a real challenge.  The worst is the first 3-5 days where I experienced high fever (103), body aches, shakes, lost appetite (total of probably 20 different symptoms).  But over the course of the month the violent nature of the first week subsided and then the real issue became fatigue.  (I still worked about 35 hours a week from home…the rest of the time was at the clinic and sleeping)  i would say my body strength was down to 40-50% by month end barely able to walk into the clinic.

Once you finish that they will give your body 2 weeks to recover and then you start the home shots at 20 units 3 times per week.  The best way to describe it as "Super Blah days", "Blah days", and depending on the timing I typical got to have a "not so Blah day" once per week.  My wife administered the shots which were not fun but really not a big deal in the scheme of things.

So here is what I experienced for those 11 months.

Shot at 7:30 PM…started feeling it at about 8:30 PM (take with Tylenol) as I went to bed.  Was able to sleep until sometime around 1-3 AM when the fever began to spike (only about 100-101 most shots).  Really restless sleeping until about 6:00 AM when fever was typically down to 99-100.  At that point energy level is probably 60-70%…but you will recover to 70-80% by mid-day.  Appetite is down and generally you feel crappy but you can function.  I worked from home and then traveled about 1-2 times per month for 2-3 days per week.  I timed my shots and trips so that nobody saw me on Super Blah days and occasional I had work from bed days.  I often would skip a shot (maybe 1-2 per month) if I had to make a 3 day trip.

A couple of other thoughts….I took drug holidays (which my doctor recommended) which required me to stop the drug 6-7 days before a beach vacation (so not too much activity).  By day 7-8 my appetite was back and I was back to almost 85-90% and by day 10 that I was feeling really good and eating, drinking, and having fairly active fun again.   The bad news is that when you come back home after 14 total days off of the shots…you are going to hate that night…back to 103 fever, real body shakes followed by a Super Super Blah day.

Sometime about 2/3rds of the way through the year, I reduced my shots to 15 units (so by about 25% of full strength) and that really helped on the depth of the Super Blah days.

So my net…you can do Interferon with a bit of common sense management.

Now back to "should you even do this"….I would really make sure you take a serious look at all of the new drugs that became available over the past year.  For stage 4 patients (and even new options for stage 3) you have so many better choices than Interferon….but your specific situation may prevent you from taking them.  BUT ABSOLUTELY MAKE SURE YOU ARE TALKING TO A MELANOMA specialist…not just an oncologist. (there are several topics relating to the IPI/Yervoy for adjunctive Stage 3…make sure you read those going back 3-4 week.)

Feel free to message me directly…and I can answer any additional questions you might have about managing the side effects if you do the Interferon path.

Best wishes….Michel

I did interferon for the full year, last treatment was last march, 2015.  I will say that the treatment was harder on me than most… my dr told me this and he does a lot of interferon.  I absolutely do not regret doing it at all, but it was really hard.  I did lose a lot of hair, and it def was not from stress… it was from the treatment.  My dr told me this rarely happens, but was not surprised it happened to me as I had such strong side effects.  It's growing back totally normally, and I was never bald, just hair got really thin.  I wont go into all of the details on what I went through, unless you really want me to – feel free to message me if you want to talk more.  But some tips to help during treatment, always take Tylenol or Advil to help alleviate fevers after injections, drink a TON of water… i thought good quality juice and coconut water really helped as well, rest, but still try to move around so you don't get too stiff, be easy and compassionate towards yourself, you will learn how your body reacts to the shots and develop a schedule and strategies around that. 

I did interferon for the full year, last treatment was last march, 2015.  I will say that the treatment was harder on me than most… my dr told me this and he does a lot of interferon.  I absolutely do not regret doing it at all, but it was really hard.  I did lose a lot of hair, and it def was not from stress… it was from the treatment.  My dr told me this rarely happens, but was not surprised it happened to me as I had such strong side effects.  It's growing back totally normally, and I was never bald, just hair got really thin.  I wont go into all of the details on what I went through, unless you really want me to – feel free to message me if you want to talk more.  But some tips to help during treatment, always take Tylenol or Advil to help alleviate fevers after injections, drink a TON of water… i thought good quality juice and coconut water really helped as well, rest, but still try to move around so you don't get too stiff, be easy and compassionate towards yourself, you will learn how your body reacts to the shots and develop a schedule and strategies around that. 

I did interferon for the full year, last treatment was last march, 2015.  I will say that the treatment was harder on me than most… my dr told me this and he does a lot of interferon.  I absolutely do not regret doing it at all, but it was really hard.  I did lose a lot of hair, and it def was not from stress… it was from the treatment.  My dr told me this rarely happens, but was not surprised it happened to me as I had such strong side effects.  It's growing back totally normally, and I was never bald, just hair got really thin.  I wont go into all of the details on what I went through, unless you really want me to – feel free to message me if you want to talk more.  But some tips to help during treatment, always take Tylenol or Advil to help alleviate fevers after injections, drink a TON of water… i thought good quality juice and coconut water really helped as well, rest, but still try to move around so you don't get too stiff, be easy and compassionate towards yourself, you will learn how your body reacts to the shots and develop a schedule and strategies around that.