Interferon symptoms– is there hope for the future?

Donna, it's been 10 years since I did interferon, but I remember this much – the first few days were the worst, and then it became a litlte more tolerable.  I did end up having a few days break before continuing at a lower dose because my blood counts got too out of whack.  They will check his counts very soon and adjust if necessary.

The low dose months were not as bad.  They weren't great, but not nearly as incapacitating.  I did have excessive fatigue and chose to take FML for the last three months of treatment.    I was able to work through high dose and the first eight months of low dose. 

So yes, there is hope around the corner.  The first few days were definitely the low point.

You probably know the drill…have him drink lots of water, tylenol, plenty of rest.  Watch out for dry, itchy skin down the line; maybe find him an unscented body lotion to help it feel better.

Hang in there,

Katy

Donna, it's been 10 years since I did interferon, but I remember this much – the first few days were the worst, and then it became a litlte more tolerable.  I did end up having a few days break before continuing at a lower dose because my blood counts got too out of whack.  They will check his counts very soon and adjust if necessary.

The low dose months were not as bad.  They weren't great, but not nearly as incapacitating.  I did have excessive fatigue and chose to take FML for the last three months of treatment.    I was able to work through high dose and the first eight months of low dose. 

So yes, there is hope around the corner.  The first few days were definitely the low point.

You probably know the drill…have him drink lots of water, tylenol, plenty of rest.  Watch out for dry, itchy skin down the line; maybe find him an unscented body lotion to help it feel better.

Hang in there,

Katy

Donna, it's been 10 years since I did interferon, but I remember this much – the first few days were the worst, and then it became a litlte more tolerable.  I did end up having a few days break before continuing at a lower dose because my blood counts got too out of whack.  They will check his counts very soon and adjust if necessary.

The low dose months were not as bad.  They weren't great, but not nearly as incapacitating.  I did have excessive fatigue and chose to take FML for the last three months of treatment.    I was able to work through high dose and the first eight months of low dose. 

So yes, there is hope around the corner.  The first few days were definitely the low point.

You probably know the drill…have him drink lots of water, tylenol, plenty of rest.  Watch out for dry, itchy skin down the line; maybe find him an unscented body lotion to help it feel better.

Hang in there,

Katy

I have done the five by infusion phase for four weeks followed by 48 weeks of self injects, so you will get no decision comments from me, but I can offer my experience.

Interferon truly does effect different people in different ways.  This is not meant to be a cheap out, but it really does.

To start, intron can kick ones ass, but the body can adapt.  I personaly know many people who did just fine after their body adjusts and have worked every day.  

I happened to be in a high profile, high pressure, high accountability profession at the time, so I had to step back.

This was because I had some brain fade and my mind simply did not work as quick, also I was sooooooooooooo tired, the long working days were something I could not hang with.

This differs between people.

Difficult as it is, try to ride it out for six weeks to see how your hubby adapts.  Truly, right now, it is too soon to tell.

He might do fine, but I can tell you that, difficult as it is, please just go with the flow for the first six weeks and let his body find a balance, hold him close and allow him an avenue for open and free expression………………because I can assure you, in his innermost mind he may be conflicted due to the interferon………….and you MUST be patient that it is the drug and not him.

As far as your decision?  You made it based upon your best evidence and best judgement.  Don't wimp out on your collective minds just because it is hard and not quick.

However, if, by using your head for something besides a hatrack, you and your husband truly think a new direction would be better……..then by all means do………………..but know this………no path forward is easy, so just don't decide for the simple reason of something simple.

I can assure you, NOTHING is easy, nor quick, nor decisive, nor conclusive, nor definitive, nor right, nor wrong.

It is only what one can abide.

I wish you well.

Charle S

I have done the five by infusion phase for four weeks followed by 48 weeks of self injects, so you will get no decision comments from me, but I can offer my experience.

Interferon truly does effect different people in different ways.  This is not meant to be a cheap out, but it really does.

To start, intron can kick ones ass, but the body can adapt.  I personaly know many people who did just fine after their body adjusts and have worked every day.  

I happened to be in a high profile, high pressure, high accountability profession at the time, so I had to step back.

This was because I had some brain fade and my mind simply did not work as quick, also I was sooooooooooooo tired, the long working days were something I could not hang with.

This differs between people.

Difficult as it is, try to ride it out for six weeks to see how your hubby adapts.  Truly, right now, it is too soon to tell.

He might do fine, but I can tell you that, difficult as it is, please just go with the flow for the first six weeks and let his body find a balance, hold him close and allow him an avenue for open and free expression………………because I can assure you, in his innermost mind he may be conflicted due to the interferon………….and you MUST be patient that it is the drug and not him.

As far as your decision?  You made it based upon your best evidence and best judgement.  Don't wimp out on your collective minds just because it is hard and not quick.

However, if, by using your head for something besides a hatrack, you and your husband truly think a new direction would be better……..then by all means do………………..but know this………no path forward is easy, so just don't decide for the simple reason of something simple.

I can assure you, NOTHING is easy, nor quick, nor decisive, nor conclusive, nor definitive, nor right, nor wrong.

It is only what one can abide.

I wish you well.

Charle S

I have done the five by infusion phase for four weeks followed by 48 weeks of self injects, so you will get no decision comments from me, but I can offer my experience.

Interferon truly does effect different people in different ways.  This is not meant to be a cheap out, but it really does.

To start, intron can kick ones ass, but the body can adapt.  I personaly know many people who did just fine after their body adjusts and have worked every day.  

I happened to be in a high profile, high pressure, high accountability profession at the time, so I had to step back.

This was because I had some brain fade and my mind simply did not work as quick, also I was sooooooooooooo tired, the long working days were something I could not hang with.

This differs between people.

Difficult as it is, try to ride it out for six weeks to see how your hubby adapts.  Truly, right now, it is too soon to tell.

He might do fine, but I can tell you that, difficult as it is, please just go with the flow for the first six weeks and let his body find a balance, hold him close and allow him an avenue for open and free expression………………because I can assure you, in his innermost mind he may be conflicted due to the interferon………….and you MUST be patient that it is the drug and not him.

As far as your decision?  You made it based upon your best evidence and best judgement.  Don't wimp out on your collective minds just because it is hard and not quick.

However, if, by using your head for something besides a hatrack, you and your husband truly think a new direction would be better……..then by all means do………………..but know this………no path forward is easy, so just don't decide for the simple reason of something simple.

I can assure you, NOTHING is easy, nor quick, nor decisive, nor conclusive, nor definitive, nor right, nor wrong.

It is only what one can abide.

I wish you well.

Charle S

Dear Donna,     I don't have specific answers for you.    I have been exposed to experiences about melanoma by coming to this board for the past six years.     I wondered if you tried to use the search feature, using the word interferon.  It pulls up many threads, and while it is such work to sift through them, perhaps you could find some experiences that would bolster you for your husband's journey with melanoma.

One thing I have learned over the six years, and that there is no consistency with melanoma—with it's rearing its ugly head with no rhyme or reason, with the treatments or recommendations of treatments that vary from doctor to doctor, hospital to hospital, and melanoma patient's responses to treatments are inconsistent as well.   Maybe inconsistent isn't the right word—there are just so many different ways that people on this board LIVE with this $#@! disease, exist with it.  Unfortunately, it comes down to what your medical professionals recommend, and what you choose, no guarantees with any of this.

My opinion thought is that at two days of treatment, finding that your husband is struggling—-I don't think this is necessarily unusual.   From what I've read over six years, this can be a gruelling time.   This is, for many you will see, not an easy road.   BUT it is not cause to despair, but perhaps a time to really pull up the bootstraps.   I am in no way suggesting you are not doing that.   Just another phrase to push you along.   A decision was made to choose to treat with interferon.   Don't look back is a favorite, and correct, saying.    Search and you will find assuring instances that others have experienced.  That is what this is board is about.   Sometimes responses don't come fast to a post, that is why I suggest searching;   in that searching, what you WILL find is hope and positivity for your situation.   Pass over the negative discussions.   Seriously.   Don't read those.   What I recall, positively, about interferon is that the first month dosages seem to be the most signficant.   Stick with it, trying to follow the one day at a time philosophy.   This is the choice he has made in treatment. 

I wish your husband well in his journey to successful outcome in choosing interferon.   No choice is an easy one, just different issues and anxieties to live with, to LIVE.

CarolA – Stage III March '05; NED since May 08

FYI:   I did not choose to do interferon in '05.   Recurrences reared up in the same region, resulting in a mastectomy in May '08.   So far, so good.   No treatments other than surgery.   My choices at that time.    Hopefully," future" choices just that: in the distant future if at all.

Dear Donna,     I don't have specific answers for you.    I have been exposed to experiences about melanoma by coming to this board for the past six years.     I wondered if you tried to use the search feature, using the word interferon.  It pulls up many threads, and while it is such work to sift through them, perhaps you could find some experiences that would bolster you for your husband's journey with melanoma.

One thing I have learned over the six years, and that there is no consistency with melanoma—with it's rearing its ugly head with no rhyme or reason, with the treatments or recommendations of treatments that vary from doctor to doctor, hospital to hospital, and melanoma patient's responses to treatments are inconsistent as well.   Maybe inconsistent isn't the right word—there are just so many different ways that people on this board LIVE with this $#@! disease, exist with it.  Unfortunately, it comes down to what your medical professionals recommend, and what you choose, no guarantees with any of this.

My opinion thought is that at two days of treatment, finding that your husband is struggling—-I don't think this is necessarily unusual.   From what I've read over six years, this can be a gruelling time.   This is, for many you will see, not an easy road.   BUT it is not cause to despair, but perhaps a time to really pull up the bootstraps.   I am in no way suggesting you are not doing that.   Just another phrase to push you along.   A decision was made to choose to treat with interferon.   Don't look back is a favorite, and correct, saying.    Search and you will find assuring instances that others have experienced.  That is what this is board is about.   Sometimes responses don't come fast to a post, that is why I suggest searching;   in that searching, what you WILL find is hope and positivity for your situation.   Pass over the negative discussions.   Seriously.   Don't read those.   What I recall, positively, about interferon is that the first month dosages seem to be the most signficant.   Stick with it, trying to follow the one day at a time philosophy.   This is the choice he has made in treatment. 

I wish your husband well in his journey to successful outcome in choosing interferon.   No choice is an easy one, just different issues and anxieties to live with, to LIVE.

CarolA – Stage III March '05; NED since May 08

FYI:   I did not choose to do interferon in '05.   Recurrences reared up in the same region, resulting in a mastectomy in May '08.   So far, so good.   No treatments other than surgery.   My choices at that time.    Hopefully," future" choices just that: in the distant future if at all.

Dear Donna,     I don't have specific answers for you.    I have been exposed to experiences about melanoma by coming to this board for the past six years.     I wondered if you tried to use the search feature, using the word interferon.  It pulls up many threads, and while it is such work to sift through them, perhaps you could find some experiences that would bolster you for your husband's journey with melanoma.

One thing I have learned over the six years, and that there is no consistency with melanoma—with it's rearing its ugly head with no rhyme or reason, with the treatments or recommendations of treatments that vary from doctor to doctor, hospital to hospital, and melanoma patient's responses to treatments are inconsistent as well.   Maybe inconsistent isn't the right word—there are just so many different ways that people on this board LIVE with this $#@! disease, exist with it.  Unfortunately, it comes down to what your medical professionals recommend, and what you choose, no guarantees with any of this.

My opinion thought is that at two days of treatment, finding that your husband is struggling—-I don't think this is necessarily unusual.   From what I've read over six years, this can be a gruelling time.   This is, for many you will see, not an easy road.   BUT it is not cause to despair, but perhaps a time to really pull up the bootstraps.   I am in no way suggesting you are not doing that.   Just another phrase to push you along.   A decision was made to choose to treat with interferon.   Don't look back is a favorite, and correct, saying.    Search and you will find assuring instances that others have experienced.  That is what this is board is about.   Sometimes responses don't come fast to a post, that is why I suggest searching;   in that searching, what you WILL find is hope and positivity for your situation.   Pass over the negative discussions.   Seriously.   Don't read those.   What I recall, positively, about interferon is that the first month dosages seem to be the most signficant.   Stick with it, trying to follow the one day at a time philosophy.   This is the choice he has made in treatment. 

I wish your husband well in his journey to successful outcome in choosing interferon.   No choice is an easy one, just different issues and anxieties to live with, to LIVE.

CarolA – Stage III March '05; NED since May 08

FYI:   I did not choose to do interferon in '05.   Recurrences reared up in the same region, resulting in a mastectomy in May '08.   So far, so good.   No treatments other than surgery.   My choices at that time.    Hopefully," future" choices just that: in the distant future if at all.

Donna,

I finished the full year of Interferon in 11/10.  The first few days were the worst.  For me, it seemed that my body (and mind) got used to the way it was going to be.  I didn't miss a day of work, but I could easily have stayed in bed.  Also, I found the last few months, especially the high heat and humidity of summer, to be difficult.  For me, it was doable, but everyone reacts differently to the treatment.  I think you have to give it a few weeks to see what happens.

I will also say that I really gave myself over to the year of Interferon.  I rarely went out at night.  Most nights, I went to bed around 8:00, so I would get 10-11 hours of sleep.  I prioritized what I needed to do…work, cleaning, cooking.  Anything else I treated on an "if I felt good enough" basis.

As everyone else has said, it's a very personal decision, and you have to do what is right for your situation.  I wish you all the best with your decision, and feel free to email me if you have any other questions or concerens.

Tricia

Donna,

I finished the full year of Interferon in 11/10.  The first few days were the worst.  For me, it seemed that my body (and mind) got used to the way it was going to be.  I didn't miss a day of work, but I could easily have stayed in bed.  Also, I found the last few months, especially the high heat and humidity of summer, to be difficult.  For me, it was doable, but everyone reacts differently to the treatment.  I think you have to give it a few weeks to see what happens.

I will also say that I really gave myself over to the year of Interferon.  I rarely went out at night.  Most nights, I went to bed around 8:00, so I would get 10-11 hours of sleep.  I prioritized what I needed to do…work, cleaning, cooking.  Anything else I treated on an "if I felt good enough" basis.

As everyone else has said, it's a very personal decision, and you have to do what is right for your situation.  I wish you all the best with your decision, and feel free to email me if you have any other questions or concerens.

Tricia

Donna,

I finished the full year of Interferon in 11/10.  The first few days were the worst.  For me, it seemed that my body (and mind) got used to the way it was going to be.  I didn't miss a day of work, but I could easily have stayed in bed.  Also, I found the last few months, especially the high heat and humidity of summer, to be difficult.  For me, it was doable, but everyone reacts differently to the treatment.  I think you have to give it a few weeks to see what happens.

I will also say that I really gave myself over to the year of Interferon.  I rarely went out at night.  Most nights, I went to bed around 8:00, so I would get 10-11 hours of sleep.  I prioritized what I needed to do…work, cleaning, cooking.  Anything else I treated on an "if I felt good enough" basis.

As everyone else has said, it's a very personal decision, and you have to do what is right for your situation.  I wish you all the best with your decision, and feel free to email me if you have any other questions or concerens.

Tricia

Donna, I did Interferon May-December 2010.  The 1st few days were the worst…..chills, fever of almost 103,  After that it got a lot better.  My dose was reduced after the 1st month when I went on self-injected maintenance.   I did have fatigue problems but since i work from home i was able to deal with it….early to bed, 11 hours of sleep and a nap during the day…whatever it took to get through it.  My main problem turned out to be anxiety.  I travel a lot on business but was unable to do so while i was on Interferon.  After a few weeks off the program I was able to run and bike and get back to my usual training  and business schedule.  I know Interferon is controversial but I wound up NED for 20 months…maybe due to Interferon, maybe not..  But I've recently become a stage 4 and would do Interferon again.   Stay positive, keep informed and ask questions.  Best of luck to you and your husband

Donna, I did Interferon May-December 2010.  The 1st few days were the worst…..chills, fever of almost 103,  After that it got a lot better.  My dose was reduced after the 1st month when I went on self-injected maintenance.   I did have fatigue problems but since i work from home i was able to deal with it….early to bed, 11 hours of sleep and a nap during the day…whatever it took to get through it.  My main problem turned out to be anxiety.  I travel a lot on business but was unable to do so while i was on Interferon.  After a few weeks off the program I was able to run and bike and get back to my usual training  and business schedule.  I know Interferon is controversial but I wound up NED for 20 months…maybe due to Interferon, maybe not..  But I've recently become a stage 4 and would do Interferon again.   Stay positive, keep informed and ask questions.  Best of luck to you and your husband

Donna, I did Interferon May-December 2010.  The 1st few days were the worst…..chills, fever of almost 103,  After that it got a lot better.  My dose was reduced after the 1st month when I went on self-injected maintenance.   I did have fatigue problems but since i work from home i was able to deal with it….early to bed, 11 hours of sleep and a nap during the day…whatever it took to get through it.  My main problem turned out to be anxiety.  I travel a lot on business but was unable to do so while i was on Interferon.  After a few weeks off the program I was able to run and bike and get back to my usual training  and business schedule.  I know Interferon is controversial but I wound up NED for 20 months…maybe due to Interferon, maybe not..  But I've recently become a stage 4 and would do Interferon again.   Stay positive, keep informed and ask questions.  Best of luck to you and your husband

I also just finished Interferon Sept 2011.  I have a lot of information out there from my experience but as was said before each person is different and has different symptoms.  My was pretty bad, but duable and worth it if it delays recurrance.  Good luck to you both.  If you go to my profile and then to my posts there is where you will find my info.

I also just finished Interferon Sept 2011.  I have a lot of information out there from my experience but as was said before each person is different and has different symptoms.  My was pretty bad, but duable and worth it if it delays recurrance.  Good luck to you both.  If you go to my profile and then to my posts there is where you will find my info.

I also just finished Interferon Sept 2011.  I have a lot of information out there from my experience but as was said before each person is different and has different symptoms.  My was pretty bad, but duable and worth it if it delays recurrance.  Good luck to you both.  If you go to my profile and then to my posts there is where you will find my info.

Donna,

I finished the High Dose Infusion a few months ago and I am currently about 2mo or so into the injection phase. Like your spouse the first High Dose infusion was rough on me, but it got better and I never had as severe symptoms as I did after the first infusion again (thank goodness)

I received 100mL pre-hydration, ibuprofen, Benadryl, IV zophran and oral Compazine prior to each infusion of Interferon.

My injections are 50% the dose of the infusions and I have tolerated those much better and the effects seem much less severe to me. I do notice that the Monday injection is more noticeable sometimes than the Wed and Fri injection. My Onc says this is sometimes the case for alot of people due to 2 days of non-treatment. I have had good and bad nights (most bad are on Mondays if they happen).

I had brain fog, dizzy feelings and some nausea (controlled by zophran). I was taking Advil but have recently switch to Aleve.

I did have days and weeks that I was ready to stop treatment and had very similar thoughts about do I want to feel bad for 12 months.

Just when I was ready to pull the plug on treatment …My labs have improved this week and I fell about 99% normal for the first time in months with virtually no symptoms.

I drink plenty of water throughout the day and rest when my body tells me to.

I have been able to continue to work, 50% during the High Dose Infusions (due to 3hr infusion protocol) and back to 100% during the injections.

Like others have stated each person is different and reacts differently to Interferon.

I wish you and your husband the best on your journey.

Allen

Donna,

I finished the High Dose Infusion a few months ago and I am currently about 2mo or so into the injection phase. Like your spouse the first High Dose infusion was rough on me, but it got better and I never had as severe symptoms as I did after the first infusion again (thank goodness)

I received 100mL pre-hydration, ibuprofen, Benadryl, IV zophran and oral Compazine prior to each infusion of Interferon.

My injections are 50% the dose of the infusions and I have tolerated those much better and the effects seem much less severe to me. I do notice that the Monday injection is more noticeable sometimes than the Wed and Fri injection. My Onc says this is sometimes the case for alot of people due to 2 days of non-treatment. I have had good and bad nights (most bad are on Mondays if they happen).

I had brain fog, dizzy feelings and some nausea (controlled by zophran). I was taking Advil but have recently switch to Aleve.

I did have days and weeks that I was ready to stop treatment and had very similar thoughts about do I want to feel bad for 12 months.

Just when I was ready to pull the plug on treatment …My labs have improved this week and I fell about 99% normal for the first time in months with virtually no symptoms.

I drink plenty of water throughout the day and rest when my body tells me to.

I have been able to continue to work, 50% during the High Dose Infusions (due to 3hr infusion protocol) and back to 100% during the injections.

Like others have stated each person is different and reacts differently to Interferon.

I wish you and your husband the best on your journey.

Allen

Donna,

I finished the High Dose Infusion a few months ago and I am currently about 2mo or so into the injection phase. Like your spouse the first High Dose infusion was rough on me, but it got better and I never had as severe symptoms as I did after the first infusion again (thank goodness)

I received 100mL pre-hydration, ibuprofen, Benadryl, IV zophran and oral Compazine prior to each infusion of Interferon.

My injections are 50% the dose of the infusions and I have tolerated those much better and the effects seem much less severe to me. I do notice that the Monday injection is more noticeable sometimes than the Wed and Fri injection. My Onc says this is sometimes the case for alot of people due to 2 days of non-treatment. I have had good and bad nights (most bad are on Mondays if they happen).

I had brain fog, dizzy feelings and some nausea (controlled by zophran). I was taking Advil but have recently switch to Aleve.

I did have days and weeks that I was ready to stop treatment and had very similar thoughts about do I want to feel bad for 12 months.

Just when I was ready to pull the plug on treatment …My labs have improved this week and I fell about 99% normal for the first time in months with virtually no symptoms.

I drink plenty of water throughout the day and rest when my body tells me to.

I have been able to continue to work, 50% during the High Dose Infusions (due to 3hr infusion protocol) and back to 100% during the injections.

Like others have stated each person is different and reacts differently to Interferon.

I wish you and your husband the best on your journey.

Allen

Hi Donna,

I completed almost 9 months of interferon in 2007.  The first night was pretty rough – body aches and crazy chills. The rest of that week was tough, fortunately I was able to stay in bed, except for going to the hospital for treatment.  Then about a week and a half into it, I developed a skin infection, so they took me off for 5 days. After I got back on, it was still rough, but not as bad as that first night.  The high-dose month was tough, but went by rather quickly.

The low-dose period wasn't easy either and seemed to just drag on.  I was always tired, achey, and after a few months I started to developed some sores in my mouth on a regular basis, which was very uncomfortable.  My hair also started to fall out and I lost about 80% of it.  I also became pretty depressed around 8 months. It was during that time that a study came out that looked at high-dose + low-dose vs. just doing high-dose. My oncologist at the time in Boston said the data showed that the high-dose alone was sufficient enough, and said I could come off if I wanted to — so I decided to end treatment. My old oncologist in Boston (I moved from the area last year) doesn't 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 at all, 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.

Best of luck to you and your husband. This is a really good forum for support and any questions you may have.

~Sarah S

stage 3a, 4 years NED

Hi Donna,

I completed almost 9 months of interferon in 2007.  The first night was pretty rough – body aches and crazy chills. The rest of that week was tough, fortunately I was able to stay in bed, except for going to the hospital for treatment.  Then about a week and a half into it, I developed a skin infection, so they took me off for 5 days. After I got back on, it was still rough, but not as bad as that first night.  The high-dose month was tough, but went by rather quickly.

The low-dose period wasn't easy either and seemed to just drag on.  I was always tired, achey, and after a few months I started to developed some sores in my mouth on a regular basis, which was very uncomfortable.  My hair also started to fall out and I lost about 80% of it.  I also became pretty depressed around 8 months. It was during that time that a study came out that looked at high-dose + low-dose vs. just doing high-dose. My oncologist at the time in Boston said the data showed that the high-dose alone was sufficient enough, and said I could come off if I wanted to — so I decided to end treatment. My old oncologist in Boston (I moved from the area last year) doesn't 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 at all, 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.

Best of luck to you and your husband. This is a really good forum for support and any questions you may have.

~Sarah S

stage 3a, 4 years NED

Hi Donna,

I completed almost 9 months of interferon in 2007.  The first night was pretty rough – body aches and crazy chills. The rest of that week was tough, fortunately I was able to stay in bed, except for going to the hospital for treatment.  Then about a week and a half into it, I developed a skin infection, so they took me off for 5 days. After I got back on, it was still rough, but not as bad as that first night.  The high-dose month was tough, but went by rather quickly.

The low-dose period wasn't easy either and seemed to just drag on.  I was always tired, achey, and after a few months I started to developed some sores in my mouth on a regular basis, which was very uncomfortable.  My hair also started to fall out and I lost about 80% of it.  I also became pretty depressed around 8 months. It was during that time that a study came out that looked at high-dose + low-dose vs. just doing high-dose. My oncologist at the time in Boston said the data showed that the high-dose alone was sufficient enough, and said I could come off if I wanted to — so I decided to end treatment. My old oncologist in Boston (I moved from the area last year) doesn't 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 at all, 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.

Best of luck to you and your husband. This is a really good forum for support and any questions you may have.

~Sarah S

stage 3a, 4 years NED

I'm thankful to see this post today. I'm starting interferon on November 7th and having a lot of the same ambivalence and nervousness. I'm stageIIIC. I was diagnosed with a recurrence from 1995 june 20th, 10 days before I retired. One lymph node was malignant – had 17 removed – from my right upper thigh and groin. had radiation following the surgery. I've not posted much here as I don't have much to add yet. I've also got recurrent prostate cancer from 2005. I'll keep my fingers crossed that your husband feels progressively better each day.

I'm thankful to see this post today. I'm starting interferon on November 7th and having a lot of the same ambivalence and nervousness. I'm stageIIIC. I was diagnosed with a recurrence from 1995 june 20th, 10 days before I retired. One lymph node was malignant – had 17 removed – from my right upper thigh and groin. had radiation following the surgery. I've not posted much here as I don't have much to add yet. I've also got recurrent prostate cancer from 2005. I'll keep my fingers crossed that your husband feels progressively better each day.

I'm thankful to see this post today. I'm starting interferon on November 7th and having a lot of the same ambivalence and nervousness. I'm stageIIIC. I was diagnosed with a recurrence from 1995 june 20th, 10 days before I retired. One lymph node was malignant – had 17 removed – from my right upper thigh and groin. had radiation following the surgery. I've not posted much here as I don't have much to add yet. I've also got recurrent prostate cancer from 2005. I'll keep my fingers crossed that your husband feels progressively better each day.

Hi Donna, 

Just wanted to add to this post… I was a caregiver to my twin sister who was diagnosed with stage 3b. She did the 1 month high dose and then maintence for a year. The first 3 days were the hardest! She had the rigors, fever, chills, so on and was questioning her decision. But on the fourth day we came home from the hospital and were waiting, waiting and waiting for the rigors and side effects and they didn't come. I won't say that she never had side effects again but nothing like those first couple of days. The best thing that helped her was water (until she developed gills from drinking so much lol) and ibupropen and tylenol before her infusion or shots. 

To give you some hope she was playing volleyball 2x or more a week while doing maintence shots and continued to do everything she did before treatment. She just had to learn to listen to her body and rest when she needed it. 

She was diagnosed Sept 2009 and currently NED so something is working for her 🙂 

Hi Donna, 

Just wanted to add to this post… I was a caregiver to my twin sister who was diagnosed with stage 3b. She did the 1 month high dose and then maintence for a year. The first 3 days were the hardest! She had the rigors, fever, chills, so on and was questioning her decision. But on the fourth day we came home from the hospital and were waiting, waiting and waiting for the rigors and side effects and they didn't come. I won't say that she never had side effects again but nothing like those first couple of days. The best thing that helped her was water (until she developed gills from drinking so much lol) and ibupropen and tylenol before her infusion or shots. 

To give you some hope she was playing volleyball 2x or more a week while doing maintence shots and continued to do everything she did before treatment. She just had to learn to listen to her body and rest when she needed it. 

She was diagnosed Sept 2009 and currently NED so something is working for her 🙂 

Hi Donna, 

Just wanted to add to this post… I was a caregiver to my twin sister who was diagnosed with stage 3b. She did the 1 month high dose and then maintence for a year. The first 3 days were the hardest! She had the rigors, fever, chills, so on and was questioning her decision. But on the fourth day we came home from the hospital and were waiting, waiting and waiting for the rigors and side effects and they didn't come. I won't say that she never had side effects again but nothing like those first couple of days. The best thing that helped her was water (until she developed gills from drinking so much lol) and ibupropen and tylenol before her infusion or shots. 

To give you some hope she was playing volleyball 2x or more a week while doing maintence shots and continued to do everything she did before treatment. She just had to learn to listen to her body and rest when she needed it. 

She was diagnosed Sept 2009 and currently NED so something is working for her 🙂