The stone age treatment interferon/ Question about side effects

Jen – I am a 3A and just finished a year's treatment of Interferon in December.  The Interferon treatment was not pleasant and I experienced most of the "normal" side effects.  The best way to describe it was like getting the flu 150 times last year.  Fever, body aches, fatigue, etc.  It was a series of super blah days followed by blah days.  The only rare side effect for me was that towards the end of the year there was flashing in my right eye which set off all kinds of alarm bells and straight to the MRI head scan and a trip to the retina specialist.

I didn't experience depression or suicide (that is so not me) but I can tell you that it was a real cloud in my life. Beyond that, I had no memory issues.  And for the good news, all of those side effects have completely reversed (most within the first 2 weeks after stopping).  

Now I am in watch and wait with PET scans every 3-4 months and MRI once per year.  As I approach my two year anniversary this fall, so far so good.

Would I do Interferon again?  Probably NOT given the so many advancements for Stage 4 patients that were just coming to market AND were not available for Stage 3 patients.  Would I do the 10 unit dose of Ipi today, probably not either for Stage 3.  While there might be adjunctive advantages, the side effects are more dramatic and potentially permanent.  Would I consider it for Stage 4….absolutely.

Happy to share more on the actual Interferon experience if you would like.

all the best….Michel

Jen – I am a 3A and just finished a year's treatment of Interferon in December.  The Interferon treatment was not pleasant and I experienced most of the "normal" side effects.  The best way to describe it was like getting the flu 150 times last year.  Fever, body aches, fatigue, etc.  It was a series of super blah days followed by blah days.  The only rare side effect for me was that towards the end of the year there was flashing in my right eye which set off all kinds of alarm bells and straight to the MRI head scan and a trip to the retina specialist.

I didn't experience depression or suicide (that is so not me) but I can tell you that it was a real cloud in my life. Beyond that, I had no memory issues.  And for the good news, all of those side effects have completely reversed (most within the first 2 weeks after stopping).  

Now I am in watch and wait with PET scans every 3-4 months and MRI once per year.  As I approach my two year anniversary this fall, so far so good.

Would I do Interferon again?  Probably NOT given the so many advancements for Stage 4 patients that were just coming to market AND were not available for Stage 3 patients.  Would I do the 10 unit dose of Ipi today, probably not either for Stage 3.  While there might be adjunctive advantages, the side effects are more dramatic and potentially permanent.  Would I consider it for Stage 4….absolutely.

Happy to share more on the actual Interferon experience if you would like.

all the best….Michel

Jen – I am a 3A and just finished a year's treatment of Interferon in December.  The Interferon treatment was not pleasant and I experienced most of the "normal" side effects.  The best way to describe it was like getting the flu 150 times last year.  Fever, body aches, fatigue, etc.  It was a series of super blah days followed by blah days.  The only rare side effect for me was that towards the end of the year there was flashing in my right eye which set off all kinds of alarm bells and straight to the MRI head scan and a trip to the retina specialist.

I didn't experience depression or suicide (that is so not me) but I can tell you that it was a real cloud in my life. Beyond that, I had no memory issues.  And for the good news, all of those side effects have completely reversed (most within the first 2 weeks after stopping).  

Now I am in watch and wait with PET scans every 3-4 months and MRI once per year.  As I approach my two year anniversary this fall, so far so good.

Would I do Interferon again?  Probably NOT given the so many advancements for Stage 4 patients that were just coming to market AND were not available for Stage 3 patients.  Would I do the 10 unit dose of Ipi today, probably not either for Stage 3.  While there might be adjunctive advantages, the side effects are more dramatic and potentially permanent.  Would I consider it for Stage 4….absolutely.

Happy to share more on the actual Interferon experience if you would like.

all the best….Michel

Hi,

Sorry you are dealing with this.  I only made it 5 months on interferon before we all agreed it was time to quit, and I'm not an expert.  I wonder if what you are describing is anxiety and not memory loss.  I had all the typical symptoms but the anxiety did me in and I wasn't willing or able to acknowledge it as a problem.  I absolutely couldn't sit still even though I was exhausted and my mind was constantly racing.  Sitting through the Drs appointments at the hospital was absolute torture bc I couldn't sit still. Just a thought.  I just don't recall reading anecdotes about memory loss but lots and lots of anxiety.  

Take care 

Hi,

Sorry you are dealing with this.  I only made it 5 months on interferon before we all agreed it was time to quit, and I'm not an expert.  I wonder if what you are describing is anxiety and not memory loss.  I had all the typical symptoms but the anxiety did me in and I wasn't willing or able to acknowledge it as a problem.  I absolutely couldn't sit still even though I was exhausted and my mind was constantly racing.  Sitting through the Drs appointments at the hospital was absolute torture bc I couldn't sit still. Just a thought.  I just don't recall reading anecdotes about memory loss but lots and lots of anxiety.  

Take care 

Hi,

Sorry you are dealing with this.  I only made it 5 months on interferon before we all agreed it was time to quit, and I'm not an expert.  I wonder if what you are describing is anxiety and not memory loss.  I had all the typical symptoms but the anxiety did me in and I wasn't willing or able to acknowledge it as a problem.  I absolutely couldn't sit still even though I was exhausted and my mind was constantly racing.  Sitting through the Drs appointments at the hospital was absolute torture bc I couldn't sit still. Just a thought.  I just don't recall reading anecdotes about memory loss but lots and lots of anxiety.  

Take care 

Maybe anti-depressant medication could help. 

Maybe anti-depressant medication could help. 

Maybe anti-depressant medication could help. 

No one can tell you the truth, Jen, because each person responds differently.  Sounds like your husband is having pretty extreme side effects.  I have had long term cognitive changes from my 6 months on interferon.  The best way I can describe it is to think of your intellect as a mountain range – interferon sawed off the top of the peaks.  Before interferon I taught statistics and did consulting work.  After interferon I couldn't do consulting – and I missed it.  But this is about your husband.  I'm trying desperately to understand why you're doing this given all the data.  I did interferon 13 years ago when there weren't many choices.  My intellectual decline has accelerated over the past 3 or 4 years.  Do I regret doing the treatment?  Hell, yes!  

 

No one can tell you the truth, Jen, because each person responds differently.  Sounds like your husband is having pretty extreme side effects.  I have had long term cognitive changes from my 6 months on interferon.  The best way I can describe it is to think of your intellect as a mountain range – interferon sawed off the top of the peaks.  Before interferon I taught statistics and did consulting work.  After interferon I couldn't do consulting – and I missed it.  But this is about your husband.  I'm trying desperately to understand why you're doing this given all the data.  I did interferon 13 years ago when there weren't many choices.  My intellectual decline has accelerated over the past 3 or 4 years.  Do I regret doing the treatment?  Hell, yes!  

 

No one can tell you the truth, Jen, because each person responds differently.  Sounds like your husband is having pretty extreme side effects.  I have had long term cognitive changes from my 6 months on interferon.  The best way I can describe it is to think of your intellect as a mountain range – interferon sawed off the top of the peaks.  Before interferon I taught statistics and did consulting work.  After interferon I couldn't do consulting – and I missed it.  But this is about your husband.  I'm trying desperately to understand why you're doing this given all the data.  I did interferon 13 years ago when there weren't many choices.  My intellectual decline has accelerated over the past 3 or 4 years.  Do I regret doing the treatment?  Hell, yes!  

 

Hi Jen. I do understand your family’s decision for interferon even with all the not so positive statistics for such a hard regimen. Give everything a shot while you work through the options-that’s my thought.

My husband did interferon in 2008 as adjuvant treatment for stage 3c in his neck lymph nodes with no primary. I can say that was a very long 12 months but he did complete it. Yes memory issues then and now. Thyroid issues, joint aches and pains, body aches and pain. It was not a good time but somehow he made it.

If you had asked him back then and even in early 2013 if he would do interferon again he would have said absolutely not. Today, after being diagnosed in Nov 2013 stage 4 with lung mets and more current into the liver, he says maybe it’s the interferon treatment that held it off for so long. So he’s glad he did do it, being the only option back then. It does come with its fair share of possible long term problems though.

I hope this helps you and your husband some. Talk with the oncologist. You already have some knowledge and experience with it but remember every treatment has potential to work on each individual differently.

Best of luck to both of you. You are both true warriors.

Hi Jen. I do understand your family’s decision for interferon even with all the not so positive statistics for such a hard regimen. Give everything a shot while you work through the options-that’s my thought.

My husband did interferon in 2008 as adjuvant treatment for stage 3c in his neck lymph nodes with no primary. I can say that was a very long 12 months but he did complete it. Yes memory issues then and now. Thyroid issues, joint aches and pains, body aches and pain. It was not a good time but somehow he made it.

If you had asked him back then and even in early 2013 if he would do interferon again he would have said absolutely not. Today, after being diagnosed in Nov 2013 stage 4 with lung mets and more current into the liver, he says maybe it’s the interferon treatment that held it off for so long. So he’s glad he did do it, being the only option back then. It does come with its fair share of possible long term problems though.

I hope this helps you and your husband some. Talk with the oncologist. You already have some knowledge and experience with it but remember every treatment has potential to work on each individual differently.

Best of luck to both of you. You are both true warriors.

Hi Jen. I do understand your family’s decision for interferon even with all the not so positive statistics for such a hard regimen. Give everything a shot while you work through the options-that’s my thought.

My husband did interferon in 2008 as adjuvant treatment for stage 3c in his neck lymph nodes with no primary. I can say that was a very long 12 months but he did complete it. Yes memory issues then and now. Thyroid issues, joint aches and pains, body aches and pain. It was not a good time but somehow he made it.

If you had asked him back then and even in early 2013 if he would do interferon again he would have said absolutely not. Today, after being diagnosed in Nov 2013 stage 4 with lung mets and more current into the liver, he says maybe it’s the interferon treatment that held it off for so long. So he’s glad he did do it, being the only option back then. It does come with its fair share of possible long term problems though.

I hope this helps you and your husband some. Talk with the oncologist. You already have some knowledge and experience with it but remember every treatment has potential to work on each individual differently.

Best of luck to both of you. You are both true warriors.

Personally not a big interferon fan, but we all do what we need to do.  Have you discussed this with his doctor?  Because honestly, some side effects can be permanent and this seems like something drastic enough to re-evaluate whether or not he should continue.  Is his blood sugar still well controlled?  If you read one study, the 1st month high dose is about as effective as the whole year.  If your husband won't bring it up with his doctor, you should.  I wouldn't take this symptom lightly and I would want his doctor to know ALL your concerns.

Personally not a big interferon fan, but we all do what we need to do.  Have you discussed this with his doctor?  Because honestly, some side effects can be permanent and this seems like something drastic enough to re-evaluate whether or not he should continue.  Is his blood sugar still well controlled?  If you read one study, the 1st month high dose is about as effective as the whole year.  If your husband won't bring it up with his doctor, you should.  I wouldn't take this symptom lightly and I would want his doctor to know ALL your concerns.

Personally not a big interferon fan, but we all do what we need to do.  Have you discussed this with his doctor?  Because honestly, some side effects can be permanent and this seems like something drastic enough to re-evaluate whether or not he should continue.  Is his blood sugar still well controlled?  If you read one study, the 1st month high dose is about as effective as the whole year.  If your husband won't bring it up with his doctor, you should.  I wouldn't take this symptom lightly and I would want his doctor to know ALL your concerns.

Maybe ask your Doctor about Leukine.  It does the same thing as Interferon with a lot less side effects.  My onc described it to me that Leukine is a much more tolerable form of that drug.  I know neither is the preferred treatment these days, but maybe switching meds could help.

Maybe ask your Doctor about Leukine.  It does the same thing as Interferon with a lot less side effects.  My onc described it to me that Leukine is a much more tolerable form of that drug.  I know neither is the preferred treatment these days, but maybe switching meds could help.

Maybe ask your Doctor about Leukine.  It does the same thing as Interferon with a lot less side effects.  My onc described it to me that Leukine is a much more tolerable form of that drug.  I know neither is the preferred treatment these days, but maybe switching meds could help.