Comments on Interferon Treatments

All I can tell you is my experience.  Back in 2001 when I went from a stage 1A "lucky you caught it so early" to IIIC I was given three choices:  watch and wait, a clinical trial, and interferon.  I wasn't comfortable with the watch and wait as I knew if it came back again, which is very likely, that I would wish I had done more.  I looked into trials, which you can't do well as they are just a researcher's "guess" and there's no good info on an on-going trial.  I did learn that no trial at that time had ever been successful, so that left interferon.  I went into it with the idea that I would quit if it got too bad. 

I had most of the side-effects, fever, chills, severe fatigue, but except for the first month, my life went on pretty much as usual and the side effects were managed with Tylenol and a lot of rest.

This is a very personal decision and not one that anyone can make for you.  I sure wish we had better options!  People will tell you all it can do is delay a recurrence but that's not so bad when we have nothing yet that's proven to be any better.  In my case, I believe it delayed things enough that my own immune system has kicked back in and is keeping me well, so far.  All I can say is "so far" since who knows what will happen later but then NOBODY knows what will happen to them "down the road".  I was told I had a 27% chance of still being here 5 years after my diagnosis and an 18% chance for 10 years.  I'm well over the 9 year mark and consider every single day a blessing.  I am very glad I did interferon in 2001/2002.  I did not get through the whole year, I quit at 9 months as I developed a pretty bad rash. 

Good luck to you.  Whatever you decide to do, never look back.  Let us know what you decide.

DebbieH, stage IIIC, NED over 9 years after interferon

All I can tell you is my experience.  Back in 2001 when I went from a stage 1A "lucky you caught it so early" to IIIC I was given three choices:  watch and wait, a clinical trial, and interferon.  I wasn't comfortable with the watch and wait as I knew if it came back again, which is very likely, that I would wish I had done more.  I looked into trials, which you can't do well as they are just a researcher's "guess" and there's no good info on an on-going trial.  I did learn that no trial at that time had ever been successful, so that left interferon.  I went into it with the idea that I would quit if it got too bad. 

I had most of the side-effects, fever, chills, severe fatigue, but except for the first month, my life went on pretty much as usual and the side effects were managed with Tylenol and a lot of rest.

This is a very personal decision and not one that anyone can make for you.  I sure wish we had better options!  People will tell you all it can do is delay a recurrence but that's not so bad when we have nothing yet that's proven to be any better.  In my case, I believe it delayed things enough that my own immune system has kicked back in and is keeping me well, so far.  All I can say is "so far" since who knows what will happen later but then NOBODY knows what will happen to them "down the road".  I was told I had a 27% chance of still being here 5 years after my diagnosis and an 18% chance for 10 years.  I'm well over the 9 year mark and consider every single day a blessing.  I am very glad I did interferon in 2001/2002.  I did not get through the whole year, I quit at 9 months as I developed a pretty bad rash. 

Good luck to you.  Whatever you decide to do, never look back.  Let us know what you decide.

DebbieH, stage IIIC, NED over 9 years after interferon

My husband finishes his year of interferon on May 9th, and has generally done very well.  As I have posted in the past, he has never missed work, takes care of our outside house activities (cutting and stacking wood), and helps take care of our two small children.  In general, the year went much better than we thought it would, when we were first cautioned about the side effects of interferon.  His blood work has consistently shown low white cell counts but not enough to ever change his dosage.  His liver function has remained fine for the year.  Your doctors will test your blood counts and liver function regularly.  My husband has lost over 30 pounds during the year and does like to sleep more than his pre-interferon self.  Everyone reacts differently to this treatment, we always felt that if his side effects were too much for him than he would just stop.  We feel fortunate that he has been able to do this well, but only time will tell if it keeps those cancer cells at bay!  Good luck to you!   Valerie (Phils wife)

My husband finishes his year of interferon on May 9th, and has generally done very well.  As I have posted in the past, he has never missed work, takes care of our outside house activities (cutting and stacking wood), and helps take care of our two small children.  In general, the year went much better than we thought it would, when we were first cautioned about the side effects of interferon.  His blood work has consistently shown low white cell counts but not enough to ever change his dosage.  His liver function has remained fine for the year.  Your doctors will test your blood counts and liver function regularly.  My husband has lost over 30 pounds during the year and does like to sleep more than his pre-interferon self.  Everyone reacts differently to this treatment, we always felt that if his side effects were too much for him than he would just stop.  We feel fortunate that he has been able to do this well, but only time will tell if it keeps those cancer cells at bay!  Good luck to you!   Valerie (Phils wife)

I did 12 months of Interferon back in 2004-2005.  I was diagnosed at Stage III with an unknown primary and had a groin lymph node dissection. I had one node with macro metastasis.  It was not an easy year but I had no young children at home, was able to take a leave from work and just take care of me.

Ten weeks after completing that year, I advanced to Stage IV with a liver mets.  Of course, my immediate thought was that I had wasted 12 months (that could have been quality time) doing Interferon  I had a liver resection (70% of my liver removed) and I was once again NED.  I then participated in a Phase II clinical trial of GM-CSF (recently, the results of this trial were released and it was shown that it provided no benefit).

Your question is about Interferon.  Here it is 2011.  Yes, i had another recurrence but many times I wonder if Interferon isn't part of the reason I have been a Stage IV patient for almost 6 years now.

Do your research, make your decision.  Honestly, I wasn't even aware of any trials for Stage III at that time (though there were some) but I knew I needed to do something.

Let us know what you decide.

Stay Strong

King

Stage IV 7/05 Liver mets

I did 12 months of Interferon back in 2004-2005.  I was diagnosed at Stage III with an unknown primary and had a groin lymph node dissection. I had one node with macro metastasis.  It was not an easy year but I had no young children at home, was able to take a leave from work and just take care of me.

Ten weeks after completing that year, I advanced to Stage IV with a liver mets.  Of course, my immediate thought was that I had wasted 12 months (that could have been quality time) doing Interferon  I had a liver resection (70% of my liver removed) and I was once again NED.  I then participated in a Phase II clinical trial of GM-CSF (recently, the results of this trial were released and it was shown that it provided no benefit).

Your question is about Interferon.  Here it is 2011.  Yes, i had another recurrence but many times I wonder if Interferon isn't part of the reason I have been a Stage IV patient for almost 6 years now.

Do your research, make your decision.  Honestly, I wasn't even aware of any trials for Stage III at that time (though there were some) but I knew I needed to do something.

Let us know what you decide.

Stay Strong

King

Stage IV 7/05 Liver mets

First month sucks. Acutally first 3 days suck and then it gets easier. I had chills, fever, and nausea and soooo tired. But I followed the tips posted here by many warriors and it helped so much:

Drink a ton of water all day

Schedule your infusion appt. for the latest time in the day so you can come home, eat dinner and go to sleep.

Stock up on soup, ensure, oranges, bananas, nuts, smoothies, milkshake ingredients as they are all easy to eat.

Have a blanket in your car for the ride home.

Get Aleve or Ibuprofin for the joint pain.

Sleep!

Try to go for walks each day, even if just around the block.

After the first month, I was able to go back to my desk job at work full time. I still was tired but it was good to be out of the house and around other people.  I did the next 11 months and I'm so proud to have completed it.

Good luck to you! You can do it!

First month sucks. Acutally first 3 days suck and then it gets easier. I had chills, fever, and nausea and soooo tired. But I followed the tips posted here by many warriors and it helped so much:

Drink a ton of water all day

Schedule your infusion appt. for the latest time in the day so you can come home, eat dinner and go to sleep.

Stock up on soup, ensure, oranges, bananas, nuts, smoothies, milkshake ingredients as they are all easy to eat.

Have a blanket in your car for the ride home.

Get Aleve or Ibuprofin for the joint pain.

Sleep!

Try to go for walks each day, even if just around the block.

After the first month, I was able to go back to my desk job at work full time. I still was tired but it was good to be out of the house and around other people.  I did the next 11 months and I'm so proud to have completed it.

Good luck to you! You can do it!

Did high dose – supposed to be 4 wks but turned in to 6 wks b/c of low wbc.  This was the most difficult part, especially the first week.  Very fatigued, fever, chills, muscle aches…was not able to work.  Once the self injection started I was able to return to work and the only side effect at this point was fatigue.

Everyone is different – stay hydrated, listen to your body, rest whenever you can.  I, unfortunately, had a recurrence after only a couple of months of self inj so I am no longer on interferon.  I am currently "watch and wait".

Good luck with whatever you decide!

Did high dose – supposed to be 4 wks but turned in to 6 wks b/c of low wbc.  This was the most difficult part, especially the first week.  Very fatigued, fever, chills, muscle aches…was not able to work.  Once the self injection started I was able to return to work and the only side effect at this point was fatigue.

Everyone is different – stay hydrated, listen to your body, rest whenever you can.  I, unfortunately, had a recurrence after only a couple of months of self inj so I am no longer on interferon.  I am currently "watch and wait".

Good luck with whatever you decide!

I was dx. with mel in 9/09 as IIIA (50 yr old female). Like you my alternatives were wait and see, or interferon. I lost my younger brother to melanoma in 1990 (he was dx as Stage IV from the start), so, "wait and see" did not seem like a viable alternative for me. I saw four drs. (including one at the Mayo Clinic) and did a lot of research on Interferon. In the end, I decided that I was in good physical condition and could handle any of the known side effects – which I experienced a bunch of them. I only did a 1-month high dose treatment and am NED still. There is a lot of good info on this board from previous posts that can help you get through it if you chose interferon. Beware of the effects of depression – it inothing to mess with. Talk with your dr. about it and hopefully he/she will recommend that you start on an anti depressant now if you opt to try Interferon. Take care,

Pat O. – IIIA, NED since 2/10

I was dx. with mel in 9/09 as IIIA (50 yr old female). Like you my alternatives were wait and see, or interferon. I lost my younger brother to melanoma in 1990 (he was dx as Stage IV from the start), so, "wait and see" did not seem like a viable alternative for me. I saw four drs. (including one at the Mayo Clinic) and did a lot of research on Interferon. In the end, I decided that I was in good physical condition and could handle any of the known side effects – which I experienced a bunch of them. I only did a 1-month high dose treatment and am NED still. There is a lot of good info on this board from previous posts that can help you get through it if you chose interferon. Beware of the effects of depression – it inothing to mess with. Talk with your dr. about it and hopefully he/she will recommend that you start on an anti depressant now if you opt to try Interferon. Take care,

Pat O. – IIIA, NED since 2/10

Hello:

The truth is, you will never know for certain if interferon has done the job for you or not.  For myself, I just thought if I had new symptoms, I would wonder why I hadn't just done it.

A few things that applied to me (but may not for others):

The first month of intravenous treatment, I was also given a bag of Zofran to counteract nausea.  I later looked up some info about it, and found that it could cause terrible constipation (very true).  I asked to try skipping the Zofran, and really felt no more or less nauseous than I had, but the other problem seemed to clear up.  A pleasant side effect was spending less time at the clinic hooked up to the i.v.

I at first resisted suggestions for anti-depressants, but relented in month 4 after reading up on it.  After 3 or 4 weeks I felt less fatigue, and my outlook was generally brighter, i.e. I felt more like I could make it for the full 12 months.  A fairly low dose seemed to work fine.

All will suggest that you self-administer the interferon at bedtime, as you will 'sleep through' the side effects.  I followed this for a while, but slept very poorly and often woke up drenched in sweat or with the chills.  I found that I could manage the side effects with ibuprofen if I did the injections earlier in the day, and then I could sleep more normally at night.

The first few months I was losing hair rapidly, but this seemed to stop subsequent to my beginning to take a daily multivitamin and paying closer attention to proper nutrition.  I won't say that was the cure, but I thought for sure I was going to be nearly bald by month 6.

I never stopped trying different things to cope better:  more exercise, supplementation, get more rest, ignore the fatigue, whatever.  I will say one of the worst things for me was so-called 'brain fog', sort of having difficulty concentrating, thinking straight, so forth.  A conversation longer than about a minute seemed tortuous to me. I was really concerned that would stick, but I think I'm generally back to normal. 

I did not miss any work due to this, but I have a desk job, not certain how I would have fared with a more physically-demanding occupation.  I have read on many forums comments that interferon 'ruined' their immune system, but I never contracted so much as a cold during or since my treatment.  Again, I can only speak for myself.

Hello:

The truth is, you will never know for certain if interferon has done the job for you or not.  For myself, I just thought if I had new symptoms, I would wonder why I hadn't just done it.

A few things that applied to me (but may not for others):

The first month of intravenous treatment, I was also given a bag of Zofran to counteract nausea.  I later looked up some info about it, and found that it could cause terrible constipation (very true).  I asked to try skipping the Zofran, and really felt no more or less nauseous than I had, but the other problem seemed to clear up.  A pleasant side effect was spending less time at the clinic hooked up to the i.v.

I at first resisted suggestions for anti-depressants, but relented in month 4 after reading up on it.  After 3 or 4 weeks I felt less fatigue, and my outlook was generally brighter, i.e. I felt more like I could make it for the full 12 months.  A fairly low dose seemed to work fine.

All will suggest that you self-administer the interferon at bedtime, as you will 'sleep through' the side effects.  I followed this for a while, but slept very poorly and often woke up drenched in sweat or with the chills.  I found that I could manage the side effects with ibuprofen if I did the injections earlier in the day, and then I could sleep more normally at night.

The first few months I was losing hair rapidly, but this seemed to stop subsequent to my beginning to take a daily multivitamin and paying closer attention to proper nutrition.  I won't say that was the cure, but I thought for sure I was going to be nearly bald by month 6.

I never stopped trying different things to cope better:  more exercise, supplementation, get more rest, ignore the fatigue, whatever.  I will say one of the worst things for me was so-called 'brain fog', sort of having difficulty concentrating, thinking straight, so forth.  A conversation longer than about a minute seemed tortuous to me. I was really concerned that would stick, but I think I'm generally back to normal. 

I did not miss any work due to this, but I have a desk job, not certain how I would have fared with a more physically-demanding occupation.  I have read on many forums comments that interferon 'ruined' their immune system, but I never contracted so much as a cold during or since my treatment.  Again, I can only speak for myself.

I did just the one month of high dose in early 2007 and have been NED ever since (Stage IIIb).  There have been studies done since that point to little if any benefit of doing the additional 11 months of shots – the high dose gives the most benefit.  For me it was a quality of life issue as I did not tolerate it well.   But it really comes down to what you feel you can live with in terms of the decision.   Best of luck to you.

I did just the one month of high dose in early 2007 and have been NED ever since (Stage IIIb).  There have been studies done since that point to little if any benefit of doing the additional 11 months of shots – the high dose gives the most benefit.  For me it was a quality of life issue as I did not tolerate it well.   But it really comes down to what you feel you can live with in terms of the decision.   Best of luck to you.

Interferon Alpha 2-B Recombinant for injection was not designed or promoted as a cure for metastatic melanoma.

In reality, it is a borrowed treatment that was first designed for Hep-C patients.

What it was and is promoted to be is an effort to prolong the incedence of recurrence in certain people.  

It is not a cure for melanoma, nor is it advertised as such.

Some people who have done Intron (interferon Alpha 2-B Recombinant for Injection) have done it it two ways over the years.

One way is to do the standard regimen of four weeks of high dose(induction phase) of receiving an IV infusion five days a week for four weeks, followed by three self injections for 48 weeks.

Another way is to do the induction phase alone.  

I know you are looking for the short story, but there really isn't one, but I'll try.

I did the full course of one year and recurred in 18 months.  I did not and do not regret my choice.

Maybe or maybe not my genetics made me pre-destined to recurr.  I do not know.

Maybe or maybe not intron pro-longed my life.  I do not know.

What I DO know is that I did Intron, recurred, and recurred,,,,,,,,,,,,seven total, but I am still alive.

I've always taken the long view on melanoma, not the short view

Charlie S

dx'd Stage 3 unknown primary in 1987

Did Intron at Stage 3 and then 4 1997-1998.

A slew of other things since, but that is my long view and melanoma is a chronic disease for me.

You just have to decide what is best for you…………..no right or wrong answers.

Interferon Alpha 2-B Recombinant for injection was not designed or promoted as a cure for metastatic melanoma.

In reality, it is a borrowed treatment that was first designed for Hep-C patients.

What it was and is promoted to be is an effort to prolong the incedence of recurrence in certain people.  

It is not a cure for melanoma, nor is it advertised as such.

Some people who have done Intron (interferon Alpha 2-B Recombinant for Injection) have done it it two ways over the years.

One way is to do the standard regimen of four weeks of high dose(induction phase) of receiving an IV infusion five days a week for four weeks, followed by three self injections for 48 weeks.

Another way is to do the induction phase alone.  

I know you are looking for the short story, but there really isn't one, but I'll try.

I did the full course of one year and recurred in 18 months.  I did not and do not regret my choice.

Maybe or maybe not my genetics made me pre-destined to recurr.  I do not know.

Maybe or maybe not intron pro-longed my life.  I do not know.

What I DO know is that I did Intron, recurred, and recurred,,,,,,,,,,,,seven total, but I am still alive.

I've always taken the long view on melanoma, not the short view

Charlie S

dx'd Stage 3 unknown primary in 1987

Did Intron at Stage 3 and then 4 1997-1998.

A slew of other things since, but that is my long view and melanoma is a chronic disease for me.

You just have to decide what is best for you…………..no right or wrong answers.

I don't know whether interferon did anything for me or not. I did not experience most of the well-known side effects, but for more than a month I was knocked down by unremitting fatigue that made even getting up from the bed to use the bathroom a major undertaking that had to be thought out. I was diagnosed at stage IIB, and at that point, after the SNB and WLE, I chose no more treatment until a satellite met turned up a couple of years later. That's when I went on interferon.

I'm not sure it did anything because three years ago I had lung mets and yesterday had RFA for a liver met.

What I'd say is that you have to base your decision on your own circumstances, and once you've decided, don't second guess yourself.

I don't know whether interferon did anything for me or not. I did not experience most of the well-known side effects, but for more than a month I was knocked down by unremitting fatigue that made even getting up from the bed to use the bathroom a major undertaking that had to be thought out. I was diagnosed at stage IIB, and at that point, after the SNB and WLE, I chose no more treatment until a satellite met turned up a couple of years later. That's when I went on interferon.

I'm not sure it did anything because three years ago I had lung mets and yesterday had RFA for a liver met.

What I'd say is that you have to base your decision on your own circumstances, and once you've decided, don't second guess yourself.

Just my opinion.  I was classified IIC back in Sept 1997 and given odds of 20% for five year survival.  I did the full 12 month course of interferon and am still NED going on 14 years.  Unlike most, I had very high dosage of Inf, even though I'm not particularly large (abut 190 lbs at the time).  The dosage was 60 million units five days/week durung the 4 week infusion phase, 25 million units three times/week  by self-injection during the second 48 week phase.  I credit my survival to the high dosage of Inf.

Just my opinion.  I was classified IIC back in Sept 1997 and given odds of 20% for five year survival.  I did the full 12 month course of interferon and am still NED going on 14 years.  Unlike most, I had very high dosage of Inf, even though I'm not particularly large (abut 190 lbs at the time).  The dosage was 60 million units five days/week durung the 4 week infusion phase, 25 million units three times/week  by self-injection during the second 48 week phase.  I credit my survival to the high dosage of Inf.

Hi! These articles might help you in your deliberations. You have to decide what's best for YOU. God luck!

Hugs

Sharyn, Stage IV

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

 http://theoncologist.alphamedpress.org/cgi/content/full/11/5/538 

http://meeting.ascopubs.org/cgi/content/abstract/25/18_suppl/8505 

Hi! These articles might help you in your deliberations. You have to decide what's best for YOU. God luck!

Hugs

Sharyn, Stage IV

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

 http://theoncologist.alphamedpress.org/cgi/content/full/11/5/538 

http://meeting.ascopubs.org/cgi/content/abstract/25/18_suppl/8505 

Tough decision.  I was diagnosed Stage IIIc (14 malignant nodes) in 2003, and opted for biochemotherapy (which includes interferon) instead of interferon alone, because the docs were telling me that the standard interferon treatments wouldn't much improve my survival odds.  Rough stuff, but today I'm still healthy and NED.  On the other hand, there are lots of treatment success stories with interferon.  If you want to know more about biochemo from the patient's perspective, I've blogged about the lighter side of the experience at http://www.hotelmelanoma.blogspot.com.

Best wishes to you.

Tough decision.  I was diagnosed Stage IIIc (14 malignant nodes) in 2003, and opted for biochemotherapy (which includes interferon) instead of interferon alone, because the docs were telling me that the standard interferon treatments wouldn't much improve my survival odds.  Rough stuff, but today I'm still healthy and NED.  On the other hand, there are lots of treatment success stories with interferon.  If you want to know more about biochemo from the patient's perspective, I've blogged about the lighter side of the experience at http://www.hotelmelanoma.blogspot.com.

Best wishes to you.

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Hi,

I am doing a research on interferon side effects and i was wondering if any of you would participate in my research.

I went through INTRON A therapy, 30 MIU induction 4 weeks,  and 18MIU maintenance 48 weeks. I had really bad side effects. 

Now my goal is to collect all the experiences from people who underwent any kind of treatment with Interferons regardless of their health condition. Intron A, Roferon A, Pegasys.. and so on.

With this information i mean to help others, offer them support whether they are about to undergo this therapy or are currently going throug.  Let me know if you are interested.

May you all be well.

Claude

Hi,

I am doing a research on interferon side effects and i was wondering if any of you would participate in my research.

I went through INTRON A therapy, 30 MIU induction 4 weeks,  and 18MIU maintenance 48 weeks. I had really bad side effects. 

Now my goal is to collect all the experiences from people who underwent any kind of treatment with Interferons regardless of their health condition. Intron A, Roferon A, Pegasys.. and so on.

With this information i mean to help others, offer them support whether they are about to undergo this therapy or are currently going throug.  Let me know if you are interested.

May you all be well.

Claude

Hi,

I am doing a research on interferon side effects and i was wondering if any of you would participate in my research.

I went through INTRON A therapy, 30 MIU induction 4 weeks,  and 18MIU maintenance 48 weeks. I had really bad side effects. 

Now my goal is to collect all the experiences from people who underwent any kind of treatment with Interferons regardless of their health condition. Intron A, Roferon A, Pegasys.. and so on.

With this information i mean to help others, offer them support whether they are about to undergo this therapy or are currently going throug.  Let me know if you are interested.

May you all be well.

Claude