Newly diagnosed Stage III patient – what have you experienced with Interferon ? close observation ?

Hi Paul,

Sorry to hear you've become a member of this club. I can't offer much advice on interferon because I opted for a clinical trial instead. I'm also Stage III (one positive node, unknown primary) and am in the MAGE vaccine trial and am being treated at Johns Hopkins. Was this the trial you were tested for by any chance?

Folks who've done the interferon have not regretted it and there are several here who've been NED for years after having done interferon. If you searched the forum you'll find plenty of posts from folks who've done interferon.

Your scans are clear and that's a very good thing!

Linda

Hi Paul,

Sorry to hear you've become a member of this club. I can't offer much advice on interferon because I opted for a clinical trial instead. I'm also Stage III (one positive node, unknown primary) and am in the MAGE vaccine trial and am being treated at Johns Hopkins. Was this the trial you were tested for by any chance?

Folks who've done the interferon have not regretted it and there are several here who've been NED for years after having done interferon. If you searched the forum you'll find plenty of posts from folks who've done interferon.

Your scans are clear and that's a very good thing!

Linda

Hi Paul,

Sorry to hear you've become a member of this club. I can't offer much advice on interferon because I opted for a clinical trial instead. I'm also Stage III (one positive node, unknown primary) and am in the MAGE vaccine trial and am being treated at Johns Hopkins. Was this the trial you were tested for by any chance?

Folks who've done the interferon have not regretted it and there are several here who've been NED for years after having done interferon. If you searched the forum you'll find plenty of posts from folks who've done interferon.

Your scans are clear and that's a very good thing!

Linda

Paul,

My husband is going to do the clinical trial E1609 which is interferon vs. ipilimumab (Yervoy). 

We have looked at the side effects and the numbers of 5-10% chance of success.  They can be daunting.

The wait and see approach scares me.  He recurred after the wait and see approach and granted it took 6 1/2 years.  I feel that we need to do something systemically now since no one gets any younger or healthier than they are now.

While interferon isn't the drug of choice, it is the only Stage 3 FDA approved therapy.

There is no reason that YOU or my hubby couldn't be one fo the 5-10% it works for!

Nothing in life worth anything comes easily!!!

barb

Paul,

My husband is going to do the clinical trial E1609 which is interferon vs. ipilimumab (Yervoy). 

We have looked at the side effects and the numbers of 5-10% chance of success.  They can be daunting.

The wait and see approach scares me.  He recurred after the wait and see approach and granted it took 6 1/2 years.  I feel that we need to do something systemically now since no one gets any younger or healthier than they are now.

While interferon isn't the drug of choice, it is the only Stage 3 FDA approved therapy.

There is no reason that YOU or my hubby couldn't be one fo the 5-10% it works for!

Nothing in life worth anything comes easily!!!

barb

Paul,

My husband is going to do the clinical trial E1609 which is interferon vs. ipilimumab (Yervoy). 

We have looked at the side effects and the numbers of 5-10% chance of success.  They can be daunting.

The wait and see approach scares me.  He recurred after the wait and see approach and granted it took 6 1/2 years.  I feel that we need to do something systemically now since no one gets any younger or healthier than they are now.

While interferon isn't the drug of choice, it is the only Stage 3 FDA approved therapy.

There is no reason that YOU or my hubby couldn't be one fo the 5-10% it works for!

Nothing in life worth anything comes easily!!!

barb

Paul,

I'm currently taking interferon.   I have 3 weeks left of the 11 month LD treatment.   I can tell you that the last 12 months has not been easy for me or my family.  I have worked the enitre time, luckily only missing about 7 days of work due to Interferon.  I chose to take a chance that it might help versus the wait and see approach.   There is alot of information about Interferon on the bulletin board.  From what I have read and experienced everyone reacts differently.  If you have any specific questions … ask away.  This is the best place for that. 

scot 

Paul,

I'm currently taking interferon.   I have 3 weeks left of the 11 month LD treatment.   I can tell you that the last 12 months has not been easy for me or my family.  I have worked the enitre time, luckily only missing about 7 days of work due to Interferon.  I chose to take a chance that it might help versus the wait and see approach.   There is alot of information about Interferon on the bulletin board.  From what I have read and experienced everyone reacts differently.  If you have any specific questions … ask away.  This is the best place for that. 

scot 

Paul,

I'm currently taking interferon.   I have 3 weeks left of the 11 month LD treatment.   I can tell you that the last 12 months has not been easy for me or my family.  I have worked the enitre time, luckily only missing about 7 days of work due to Interferon.  I chose to take a chance that it might help versus the wait and see approach.   There is alot of information about Interferon on the bulletin board.  From what I have read and experienced everyone reacts differently.  If you have any specific questions … ask away.  This is the best place for that. 

scot 

Hi Paul,

Just wanted to provide you with my experience with interferon.  A little background info: I've had 3 primaries – first was in 2003 when I was 25yrs old – it was stage 1 on my back, then another, stage 0 (thin mel), on my arm in 2005, then in 2006 stage 3a on the back of my right leg with micromets in sentinel node in my groin.  After I had all the nodes in my right groin removed, I decided to start interferon in Feb. 2007. 

In terms of side effects, I was tired a lot, and pretty much felt crappy most of the time.  It's true what they say about flu-like symptoms, I had body aches, fatigue, and headaches on a daily basis — occasionally I had an upset stomach and I'd often have sores in my mouth. About 80% of my hair fell out, which was pretty upsetting.  The high-dose period went by pretty fast – I'd have treatment in the morning, then just rest for the day.  The low-dose period kicked my butt and after 8 months, I felt pretty depressed, which I guess is fairly common.  It was during that time that a study came out that looked at high-dose + low-dose vs. just doing high-dose. My oncologist in Boston at the time said the data showed that the high-dose alone was sufficient enough, and said I could come off if I wanted to — I wanted to.  And in fact, my old oncologist (I moved from the area last year) doesn't even offer low-dose to his stage 3a patients anymore.

So all in all, I did almost 9 months and even though it was tough, I don't regret it and had I not felt so depressed, I probably would have completed the full 12 months. I'm currently 4 years NED, and I do believe interferon worked for me.

I know it's a hard, and very personal decision on whether or not to move forward with interferon.  I think what you're doing – looking at the research and talking to people of their experiences – is the best way to make the difficult decision.

Best of luck! If you have any questions, don't hesitiate to send me a message.

~SarahS

Stage 3a

Hi Paul,

Just wanted to provide you with my experience with interferon.  A little background info: I've had 3 primaries – first was in 2003 when I was 25yrs old – it was stage 1 on my back, then another, stage 0 (thin mel), on my arm in 2005, then in 2006 stage 3a on the back of my right leg with micromets in sentinel node in my groin.  After I had all the nodes in my right groin removed, I decided to start interferon in Feb. 2007. 

In terms of side effects, I was tired a lot, and pretty much felt crappy most of the time.  It's true what they say about flu-like symptoms, I had body aches, fatigue, and headaches on a daily basis — occasionally I had an upset stomach and I'd often have sores in my mouth. About 80% of my hair fell out, which was pretty upsetting.  The high-dose period went by pretty fast – I'd have treatment in the morning, then just rest for the day.  The low-dose period kicked my butt and after 8 months, I felt pretty depressed, which I guess is fairly common.  It was during that time that a study came out that looked at high-dose + low-dose vs. just doing high-dose. My oncologist in Boston at the time said the data showed that the high-dose alone was sufficient enough, and said I could come off if I wanted to — I wanted to.  And in fact, my old oncologist (I moved from the area last year) doesn't even offer low-dose to his stage 3a patients anymore.

So all in all, I did almost 9 months and even though it was tough, I don't regret it and had I not felt so depressed, I probably would have completed the full 12 months. I'm currently 4 years NED, and I do believe interferon worked for me.

I know it's a hard, and very personal decision on whether or not to move forward with interferon.  I think what you're doing – looking at the research and talking to people of their experiences – is the best way to make the difficult decision.

Best of luck! If you have any questions, don't hesitiate to send me a message.

~SarahS

Stage 3a

Hi Paul,

Just wanted to provide you with my experience with interferon.  A little background info: I've had 3 primaries – first was in 2003 when I was 25yrs old – it was stage 1 on my back, then another, stage 0 (thin mel), on my arm in 2005, then in 2006 stage 3a on the back of my right leg with micromets in sentinel node in my groin.  After I had all the nodes in my right groin removed, I decided to start interferon in Feb. 2007. 

In terms of side effects, I was tired a lot, and pretty much felt crappy most of the time.  It's true what they say about flu-like symptoms, I had body aches, fatigue, and headaches on a daily basis — occasionally I had an upset stomach and I'd often have sores in my mouth. About 80% of my hair fell out, which was pretty upsetting.  The high-dose period went by pretty fast – I'd have treatment in the morning, then just rest for the day.  The low-dose period kicked my butt and after 8 months, I felt pretty depressed, which I guess is fairly common.  It was during that time that a study came out that looked at high-dose + low-dose vs. just doing high-dose. My oncologist in Boston at the time said the data showed that the high-dose alone was sufficient enough, and said I could come off if I wanted to — I wanted to.  And in fact, my old oncologist (I moved from the area last year) doesn't even offer low-dose to his stage 3a patients anymore.

So all in all, I did almost 9 months and even though it was tough, I don't regret it and had I not felt so depressed, I probably would have completed the full 12 months. I'm currently 4 years NED, and I do believe interferon worked for me.

I know it's a hard, and very personal decision on whether or not to move forward with interferon.  I think what you're doing – looking at the research and talking to people of their experiences – is the best way to make the difficult decision.

Best of luck! If you have any questions, don't hesitiate to send me a message.

~SarahS

Stage 3a

Paul – Sorry you joined us.  You must be in excellent condition to be considered for a trial so I wouldn't let you age worry you too much.  I am also stage 3a dx March 2010.  I chose the wait and watch approach.  The decision is a very personal one.  There seems to be no right or wrong answer.  My reasoning was that interferon would only giive me a 5-10% advantage – and by the way the percentage is multiplied not added so if you have a 50% recurrance rate than at best you might get a 55% (50*1.10).  But the kicker for me was interferon did not increase survial rates.  So I could see no reason to give up a year of my life.  I am sure what ever decision you make it will be the right one for you.

Here is a quote from Paul Chapman in an analysis about interferon. He heads the melanoma group at Sloan Kettering,   "What does all this mean to the patient? It means that, among<patients destined to recur, a year’s worth of HD IFN treatmentcan delay the time of recurrence in a small subset, althoughfor half of these patients this delay will be less than 1 year.However, the overall chance of recurrence and the overall survivalis not improved. This means that, if the patient is destinedto relapse and die of melanoma, HD IFN does not affect thisnor does it significantly delay the time of death."

Good Luck,

Mary

Stage 3

17 Months NED

Paul – Sorry you joined us.  You must be in excellent condition to be considered for a trial so I wouldn't let you age worry you too much.  I am also stage 3a dx March 2010.  I chose the wait and watch approach.  The decision is a very personal one.  There seems to be no right or wrong answer.  My reasoning was that interferon would only giive me a 5-10% advantage – and by the way the percentage is multiplied not added so if you have a 50% recurrance rate than at best you might get a 55% (50*1.10).  But the kicker for me was interferon did not increase survial rates.  So I could see no reason to give up a year of my life.  I am sure what ever decision you make it will be the right one for you.

Here is a quote from Paul Chapman in an analysis about interferon. He heads the melanoma group at Sloan Kettering,   "What does all this mean to the patient? It means that, among<patients destined to recur, a year’s worth of HD IFN treatmentcan delay the time of recurrence in a small subset, althoughfor half of these patients this delay will be less than 1 year.However, the overall chance of recurrence and the overall survivalis not improved. This means that, if the patient is destinedto relapse and die of melanoma, HD IFN does not affect thisnor does it significantly delay the time of death."

Good Luck,

Mary

Stage 3

17 Months NED

Paul – Sorry you joined us.  You must be in excellent condition to be considered for a trial so I wouldn't let you age worry you too much.  I am also stage 3a dx March 2010.  I chose the wait and watch approach.  The decision is a very personal one.  There seems to be no right or wrong answer.  My reasoning was that interferon would only giive me a 5-10% advantage – and by the way the percentage is multiplied not added so if you have a 50% recurrance rate than at best you might get a 55% (50*1.10).  But the kicker for me was interferon did not increase survial rates.  So I could see no reason to give up a year of my life.  I am sure what ever decision you make it will be the right one for you.

Here is a quote from Paul Chapman in an analysis about interferon. He heads the melanoma group at Sloan Kettering,   "What does all this mean to the patient? It means that, among<patients destined to recur, a year’s worth of HD IFN treatmentcan delay the time of recurrence in a small subset, althoughfor half of these patients this delay will be less than 1 year.However, the overall chance of recurrence and the overall survivalis not improved. This means that, if the patient is destinedto relapse and die of melanoma, HD IFN does not affect thisnor does it significantly delay the time of death."

Good Luck,

Mary

Stage 3

17 Months NED

I'm confused.  Is interferon immunotherapy IL-2 or interferon?  Some patients swear by interferon and some doctors don't use it as they view it as antiquated and inneffective.  I did 2 rounds of IL-2 and I'm praying that I have to go back for  more (I don't know about everyone's protocol, but mine is that if scans show my mel is either stable or getting better, I go for another round)  

Karen

I'm confused.  Is interferon immunotherapy IL-2 or interferon?  Some patients swear by interferon and some doctors don't use it as they view it as antiquated and inneffective.  I did 2 rounds of IL-2 and I'm praying that I have to go back for  more (I don't know about everyone's protocol, but mine is that if scans show my mel is either stable or getting better, I go for another round)  

Karen

I'm confused.  Is interferon immunotherapy IL-2 or interferon?  Some patients swear by interferon and some doctors don't use it as they view it as antiquated and inneffective.  I did 2 rounds of IL-2 and I'm praying that I have to go back for  more (I don't know about everyone's protocol, but mine is that if scans show my mel is either stable or getting better, I go for another round)  

Karen

Paul, I was stage IIIC  Had surgery for mole romoval along with parotid gland and 16 lymph nodes…2 positive.  I had radiation followed by Interferon.  I had to quit Interferon after 7 months due to possible central nervous system damage.  The worst part was anxiety.  Although I'm now stage 4 with a small bone metatasis I was NED for 20 months durng and after Interferon.  I was able to function OK throughout that time.  The fact that I work from home made it easier but the bottom line is that while it wasn't a pleasant experience  I'd do it again in a minute.  If it gets unbearable or too toxic, it can be discontinued.

Best of luck….most of all get educated and stay positive

Frank D

Paul, I was stage IIIC  Had surgery for mole romoval along with parotid gland and 16 lymph nodes…2 positive.  I had radiation followed by Interferon.  I had to quit Interferon after 7 months due to possible central nervous system damage.  The worst part was anxiety.  Although I'm now stage 4 with a small bone metatasis I was NED for 20 months durng and after Interferon.  I was able to function OK throughout that time.  The fact that I work from home made it easier but the bottom line is that while it wasn't a pleasant experience  I'd do it again in a minute.  If it gets unbearable or too toxic, it can be discontinued.

Best of luck….most of all get educated and stay positive

Frank D

Paul, I was stage IIIC  Had surgery for mole romoval along with parotid gland and 16 lymph nodes…2 positive.  I had radiation followed by Interferon.  I had to quit Interferon after 7 months due to possible central nervous system damage.  The worst part was anxiety.  Although I'm now stage 4 with a small bone metatasis I was NED for 20 months durng and after Interferon.  I was able to function OK throughout that time.  The fact that I work from home made it easier but the bottom line is that while it wasn't a pleasant experience  I'd do it again in a minute.  If it gets unbearable or too toxic, it can be discontinued.

Best of luck….most of all get educated and stay positive

Frank D

Paul, I was stage IIIC  Had surgery for mole romoval along with parotid gland and 16 lymph nodes…2 positive.  I had radiation followed by Interferon.  I had to quit Interferon after 7 months due to possible central nervous system damage.  The worst part was anxiety.  Although I'm now stage 4 with a small bone metatasis I was NED for 20 months durng and after Interferon.  I was able to function OK throughout that time.  The fact that I work from home made it easier but the bottom line is that while it wasn't a pleasant experience  I'd do it again in a minute.  If it gets unbearable or too toxic, it can be discontinued.

Best of luck….most of all get educated and stay positive

Frank D

Paul, I was stage IIIC  Had surgery for mole romoval along with parotid gland and 16 lymph nodes…2 positive.  I had radiation followed by Interferon.  I had to quit Interferon after 7 months due to possible central nervous system damage.  The worst part was anxiety.  Although I'm now stage 4 with a small bone metatasis I was NED for 20 months durng and after Interferon.  I was able to function OK throughout that time.  The fact that I work from home made it easier but the bottom line is that while it wasn't a pleasant experience  I'd do it again in a minute.  If it gets unbearable or too toxic, it can be discontinued.

Best of luck….most of all get educated and stay positive

Frank D

Paul, I was stage IIIC  Had surgery for mole romoval along with parotid gland and 16 lymph nodes…2 positive.  I had radiation followed by Interferon.  I had to quit Interferon after 7 months due to possible central nervous system damage.  The worst part was anxiety.  Although I'm now stage 4 with a small bone metatasis I was NED for 20 months durng and after Interferon.  I was able to function OK throughout that time.  The fact that I work from home made it easier but the bottom line is that while it wasn't a pleasant experience  I'd do it again in a minute.  If it gets unbearable or too toxic, it can be discontinued.

Best of luck….most of all get educated and stay positive

Frank D

I didn’t do interferon (opted for a clinical trial) but wanted to give you some encouragement. I had clear scans at the 8. 1/2 year mark and hopefully will do so again in a week or two now that my insurer has approved the payments! That would make 10 years NED.

So, no new info sorry….but wanted you to know that it’s possible to do well..

Good luck

AlisonC
Stage IIIB
NED since 2001

I didn’t do interferon (opted for a clinical trial) but wanted to give you some encouragement. I had clear scans at the 8. 1/2 year mark and hopefully will do so again in a week or two now that my insurer has approved the payments! That would make 10 years NED.

So, no new info sorry….but wanted you to know that it’s possible to do well..

Good luck

AlisonC
Stage IIIB
NED since 2001

I didn’t do interferon (opted for a clinical trial) but wanted to give you some encouragement. I had clear scans at the 8. 1/2 year mark and hopefully will do so again in a week or two now that my insurer has approved the payments! That would make 10 years NED.

So, no new info sorry….but wanted you to know that it’s possible to do well..

Good luck

AlisonC
Stage IIIB
NED since 2001

Hi Paul, I'm sorry that you have joined us.  I was diagnosed Stage III 11 years ago,. I had one sentinel node with extracapsulary spread.  I received four weeks of radiation therapy and it was bearable.  You can read my patnet under Nicky

I am sending lots of positive thoughts your way.

Hi Paul, I'm sorry that you have joined us.  I was diagnosed Stage III 11 years ago,. I had one sentinel node with extracapsulary spread.  I received four weeks of radiation therapy and it was bearable.  You can read my patnet under Nicky

I am sending lots of positive thoughts your way.

Hi Paul, I'm sorry that you have joined us.  I was diagnosed Stage III 11 years ago,. I had one sentinel node with extracapsulary spread.  I received four weeks of radiation therapy and it was bearable.  You can read my patnet under Nicky

I am sending lots of positive thoughts your way.