Realistically, how does interferon alter daily life?

Hi Colleen,   I read your initial post and am so sorry you're here and having to make these difficult decisions.    The problem with predicting the effects of interferon is that they are *very* different for each person.  Some people barely notice while others are debilitated by it.  I have tried to see trends in the reports by MPIP people but it doesn't seem dependent on age, sex, or anything I can identify.    

I did boot camp followed by 6 months of 3 times/week shots.  I quit when I needed a wheelchair to get around.  At the time (2006) my oncologist cited some research suggesting that the boot camp was as effective as the year of shots.  He was not in favor of the weekly shots but I inisisted.  I haven't followed up on the research, but know that it is a controversial treatment.   

Do your research, talk to your onc,  but when you and your husband make that decision don't look back and don't second guess.    

Fen

Hi Colleen,   I read your initial post and am so sorry you're here and having to make these difficult decisions.    The problem with predicting the effects of interferon is that they are *very* different for each person.  Some people barely notice while others are debilitated by it.  I have tried to see trends in the reports by MPIP people but it doesn't seem dependent on age, sex, or anything I can identify.    

I did boot camp followed by 6 months of 3 times/week shots.  I quit when I needed a wheelchair to get around.  At the time (2006) my oncologist cited some research suggesting that the boot camp was as effective as the year of shots.  He was not in favor of the weekly shots but I inisisted.  I haven't followed up on the research, but know that it is a controversial treatment.   

Do your research, talk to your onc,  but when you and your husband make that decision don't look back and don't second guess.    

Fen

Hi Colleen,   I read your initial post and am so sorry you're here and having to make these difficult decisions.    The problem with predicting the effects of interferon is that they are *very* different for each person.  Some people barely notice while others are debilitated by it.  I have tried to see trends in the reports by MPIP people but it doesn't seem dependent on age, sex, or anything I can identify.    

I did boot camp followed by 6 months of 3 times/week shots.  I quit when I needed a wheelchair to get around.  At the time (2006) my oncologist cited some research suggesting that the boot camp was as effective as the year of shots.  He was not in favor of the weekly shots but I inisisted.  I haven't followed up on the research, but know that it is a controversial treatment.   

Do your research, talk to your onc,  but when you and your husband make that decision don't look back and don't second guess.    

Fen

Colleen ,
I agree with FEN. Everyone one reacts differently. I did one month high dose and completed 11 months low dose. It was not easy. The first month all I did was sleep and goto work. I was very fornutate to have an job that allows me to sit in front of a computer all day and take a breaks when needed. I did not do anything strenous for the entire month. The next 11 months I was able to do more, but still was not easy. If you look up interferon posts you will get a wide variety opinions. Like a lot of others have said you need to make a decision an not look back. For my wife and I we decided to to do everything we could always knowing that I could stop treatments at anytime.

Scot

Colleen ,
I agree with FEN. Everyone one reacts differently. I did one month high dose and completed 11 months low dose. It was not easy. The first month all I did was sleep and goto work. I was very fornutate to have an job that allows me to sit in front of a computer all day and take a breaks when needed. I did not do anything strenous for the entire month. The next 11 months I was able to do more, but still was not easy. If you look up interferon posts you will get a wide variety opinions. Like a lot of others have said you need to make a decision an not look back. For my wife and I we decided to to do everything we could always knowing that I could stop treatments at anytime.

Scot

Colleen ,
I agree with FEN. Everyone one reacts differently. I did one month high dose and completed 11 months low dose. It was not easy. The first month all I did was sleep and goto work. I was very fornutate to have an job that allows me to sit in front of a computer all day and take a breaks when needed. I did not do anything strenous for the entire month. The next 11 months I was able to do more, but still was not easy. If you look up interferon posts you will get a wide variety opinions. Like a lot of others have said you need to make a decision an not look back. For my wife and I we decided to to do everything we could always knowing that I could stop treatments at anytime.

Scot

My experience was fairly mild compared to what others have reported. The first month all I did was go for the infusions, go home & veg.  I was glad I didn't have to go to my office job.  I had retired mostly for other reasons.  The rest of the 11 months, I was just tired.  I had always looked forward to playing more golf in retirement and walking on the course as I did when much younger.  So one day I tried.  I only made 3 holes & had to hitch a ride back to the parking lot with a marshall.  I should point out I was in my mid-60s & very out of shape even before diagnosis.  Any stories you get are only anectdotal.  I agree with the above that there is no typical reaction and no way to predict the effects.   Dan

My experience was fairly mild compared to what others have reported. The first month all I did was go for the infusions, go home & veg.  I was glad I didn't have to go to my office job.  I had retired mostly for other reasons.  The rest of the 11 months, I was just tired.  I had always looked forward to playing more golf in retirement and walking on the course as I did when much younger.  So one day I tried.  I only made 3 holes & had to hitch a ride back to the parking lot with a marshall.  I should point out I was in my mid-60s & very out of shape even before diagnosis.  Any stories you get are only anectdotal.  I agree with the above that there is no typical reaction and no way to predict the effects.   Dan

My experience was fairly mild compared to what others have reported. The first month all I did was go for the infusions, go home & veg.  I was glad I didn't have to go to my office job.  I had retired mostly for other reasons.  The rest of the 11 months, I was just tired.  I had always looked forward to playing more golf in retirement and walking on the course as I did when much younger.  So one day I tried.  I only made 3 holes & had to hitch a ride back to the parking lot with a marshall.  I should point out I was in my mid-60s & very out of shape even before diagnosis.  Any stories you get are only anectdotal.  I agree with the above that there is no typical reaction and no way to predict the effects.   Dan

Since you are an organic farmer, you know the importance of thinking outside the box you know many things accepted are actually not good for us.. Please do more research as interferon is a drug of the past not shown to extend overall survival.  Any problems with depression will be worsened and possibly permanent too.  You might look to a trial that offers IPI to compare to interferon. Or watch and wait for any recur and take care of it right away.  there is also Oncovex and a few other trials to look into for stage 3, proving more effective and not so toxic.  You want something that actually increases your immune system's abilities not something toxic.

Since you are an organic farmer, you know the importance of thinking outside the box you know many things accepted are actually not good for us.. Please do more research as interferon is a drug of the past not shown to extend overall survival.  Any problems with depression will be worsened and possibly permanent too.  You might look to a trial that offers IPI to compare to interferon. Or watch and wait for any recur and take care of it right away.  there is also Oncovex and a few other trials to look into for stage 3, proving more effective and not so toxic.  You want something that actually increases your immune system's abilities not something toxic.

Since you are an organic farmer, you know the importance of thinking outside the box you know many things accepted are actually not good for us.. Please do more research as interferon is a drug of the past not shown to extend overall survival.  Any problems with depression will be worsened and possibly permanent too.  You might look to a trial that offers IPI to compare to interferon. Or watch and wait for any recur and take care of it right away.  there is also Oncovex and a few other trials to look into for stage 3, proving more effective and not so toxic.  You want something that actually increases your immune system's abilities not something toxic.

Colleen,

I hesitated to answer this question, but my eldest heard me and said " Mom, they are trying to figure out what to expect, I think it is only fair that they get input from experience of others". She feels strongly about it, because we specifically teaveled out of state to see a specialist in PA, and he told me of folks golfing and running marathons while on it… this was not in line at all with my response to it, so I will just share my experience. For perspective, I was 45 and in otherwise excellent health at the time of treatment. I took the high dose ( per IV 5 times a week) for one month, then the injections at home which I was able to continue for 5 months until I opted out. The first month was very difficult for me with flu-like symptoms and extreme fatigue. After the first few days, most of my life consised of taking the treatments, and sleeping or resting. After that, it got a little better, but I was not able to work at all, and required breaks and lowered dosages on several occasions.I was extremely tired, did not feel well, and had a very difficult time concentraing or remembering things. My Oncologist ( not the out of state specialist) later told me that age is no predictor of how you will do, and the side effects are generally difficult for everyone. Obviously, I am not saying this to discourage, and as you see from responses already… not everyone is the same. But, in my opinion, if you have the option of hiring help to train ahead of time, it would be a wise thing to do. The first month is difficult for everyone I have spoken to, plus just the time required to go in for treatments. If he has an easier time of it, and you find you dont need much help after the first month or two, you could reduce your help to part time, but it seems like it would offer lots of peace of mind and relieve pressure on him to have someone else able to help carry the workload.I am sorry you are having to deal with all of this, I know it affects the whole family so much. Thank you also to you and your family for being a part in making Organic Dairy available to those of us who really think it needs to be that way to be healthy and good!!!     🙂

Best Wishes to you and your family in these coming days and as you are making decisions,

Tina 

Colleen,

I hesitated to answer this question, but my eldest heard me and said " Mom, they are trying to figure out what to expect, I think it is only fair that they get input from experience of others". She feels strongly about it, because we specifically teaveled out of state to see a specialist in PA, and he told me of folks golfing and running marathons while on it… this was not in line at all with my response to it, so I will just share my experience. For perspective, I was 45 and in otherwise excellent health at the time of treatment. I took the high dose ( per IV 5 times a week) for one month, then the injections at home which I was able to continue for 5 months until I opted out. The first month was very difficult for me with flu-like symptoms and extreme fatigue. After the first few days, most of my life consised of taking the treatments, and sleeping or resting. After that, it got a little better, but I was not able to work at all, and required breaks and lowered dosages on several occasions.I was extremely tired, did not feel well, and had a very difficult time concentraing or remembering things. My Oncologist ( not the out of state specialist) later told me that age is no predictor of how you will do, and the side effects are generally difficult for everyone. Obviously, I am not saying this to discourage, and as you see from responses already… not everyone is the same. But, in my opinion, if you have the option of hiring help to train ahead of time, it would be a wise thing to do. The first month is difficult for everyone I have spoken to, plus just the time required to go in for treatments. If he has an easier time of it, and you find you dont need much help after the first month or two, you could reduce your help to part time, but it seems like it would offer lots of peace of mind and relieve pressure on him to have someone else able to help carry the workload.I am sorry you are having to deal with all of this, I know it affects the whole family so much. Thank you also to you and your family for being a part in making Organic Dairy available to those of us who really think it needs to be that way to be healthy and good!!!     🙂

Best Wishes to you and your family in these coming days and as you are making decisions,

Tina 

Colleen,

I hesitated to answer this question, but my eldest heard me and said " Mom, they are trying to figure out what to expect, I think it is only fair that they get input from experience of others". She feels strongly about it, because we specifically teaveled out of state to see a specialist in PA, and he told me of folks golfing and running marathons while on it… this was not in line at all with my response to it, so I will just share my experience. For perspective, I was 45 and in otherwise excellent health at the time of treatment. I took the high dose ( per IV 5 times a week) for one month, then the injections at home which I was able to continue for 5 months until I opted out. The first month was very difficult for me with flu-like symptoms and extreme fatigue. After the first few days, most of my life consised of taking the treatments, and sleeping or resting. After that, it got a little better, but I was not able to work at all, and required breaks and lowered dosages on several occasions.I was extremely tired, did not feel well, and had a very difficult time concentraing or remembering things. My Oncologist ( not the out of state specialist) later told me that age is no predictor of how you will do, and the side effects are generally difficult for everyone. Obviously, I am not saying this to discourage, and as you see from responses already… not everyone is the same. But, in my opinion, if you have the option of hiring help to train ahead of time, it would be a wise thing to do. The first month is difficult for everyone I have spoken to, plus just the time required to go in for treatments. If he has an easier time of it, and you find you dont need much help after the first month or two, you could reduce your help to part time, but it seems like it would offer lots of peace of mind and relieve pressure on him to have someone else able to help carry the workload.I am sorry you are having to deal with all of this, I know it affects the whole family so much. Thank you also to you and your family for being a part in making Organic Dairy available to those of us who really think it needs to be that way to be healthy and good!!!     🙂

Best Wishes to you and your family in these coming days and as you are making decisions,

Tina 

Hi Colleen,

All I can do is share my experience which is this – the first high-dose month was pretty bad, extreme fatigue and fever/chills for the most part but we did go out for dinner a few times and I still went shopping occasionally.  I could not have worked tht month.  The rest of it wasn't so bad, I needed to rest a lot but there was no nausea, the fever and chills subsided and it was mostly the fatigue but it was certainly doable.  I went into it with the idea that if it got too bad I'd just quit and at 9 months I developed a terrible rash and that was it for me.  If I were in your shoes and your husband does go with inf then I'd see if you could get some extra help that first month.

As you know, there's still not a lot of good options for us out there.  I did this back in 2001/2001 and I'm stage IIIC so the delay in recurrence has been a LONG one for me (11 years NED two weeks ago!)  We all need to remember that there is NOTHING wrong with doing something that can delay a recurrence.  My idea is always to delay, delay, delay until they do come up with something that can rid of this. 

I wish you and your husband good luck with this decision – it's certainly a hard one, but whatever he decides he needs to know it's the best one for him.  He's lucky he's got you for support too.  Let us know what decision is made.

DebbieH, stage IIIC, NED 11 years after INTERFERON

Hi Colleen,

All I can do is share my experience which is this – the first high-dose month was pretty bad, extreme fatigue and fever/chills for the most part but we did go out for dinner a few times and I still went shopping occasionally.  I could not have worked tht month.  The rest of it wasn't so bad, I needed to rest a lot but there was no nausea, the fever and chills subsided and it was mostly the fatigue but it was certainly doable.  I went into it with the idea that if it got too bad I'd just quit and at 9 months I developed a terrible rash and that was it for me.  If I were in your shoes and your husband does go with inf then I'd see if you could get some extra help that first month.

As you know, there's still not a lot of good options for us out there.  I did this back in 2001/2001 and I'm stage IIIC so the delay in recurrence has been a LONG one for me (11 years NED two weeks ago!)  We all need to remember that there is NOTHING wrong with doing something that can delay a recurrence.  My idea is always to delay, delay, delay until they do come up with something that can rid of this. 

I wish you and your husband good luck with this decision – it's certainly a hard one, but whatever he decides he needs to know it's the best one for him.  He's lucky he's got you for support too.  Let us know what decision is made.

DebbieH, stage IIIC, NED 11 years after INTERFERON

Hi Colleen,

All I can do is share my experience which is this – the first high-dose month was pretty bad, extreme fatigue and fever/chills for the most part but we did go out for dinner a few times and I still went shopping occasionally.  I could not have worked tht month.  The rest of it wasn't so bad, I needed to rest a lot but there was no nausea, the fever and chills subsided and it was mostly the fatigue but it was certainly doable.  I went into it with the idea that if it got too bad I'd just quit and at 9 months I developed a terrible rash and that was it for me.  If I were in your shoes and your husband does go with inf then I'd see if you could get some extra help that first month.

As you know, there's still not a lot of good options for us out there.  I did this back in 2001/2001 and I'm stage IIIC so the delay in recurrence has been a LONG one for me (11 years NED two weeks ago!)  We all need to remember that there is NOTHING wrong with doing something that can delay a recurrence.  My idea is always to delay, delay, delay until they do come up with something that can rid of this. 

I wish you and your husband good luck with this decision – it's certainly a hard one, but whatever he decides he needs to know it's the best one for him.  He's lucky he's got you for support too.  Let us know what decision is made.

DebbieH, stage IIIC, NED 11 years after INTERFERON

I am about three weeks out from finishing Interferon.  For me it was tough but manageable.  I WOULD DO IT AGAIN FOR THE SAME REASONS.

When deciding wheteher to do it or not,  my choosing was based on two reasons

1.  I have a son, I need to be here for him.  My oncologist indicated that interferon was a way of it.  To prolong my life until the research currently in trial right now is available as treatment.  Also I read a post from a women on this web site that interferon was able to delay her reoccurance for 11 years.

2,  My tumor was ulcerated and interferon is 60 percent more effective on ulcerated tumors.  Someone on this web site sent me a link of a study in california that based on data indicated this.

The 30 day induction was tough.  I was tired, sick and cold pretty much every day.  I dropped 30 pounds in that time and was very weak by the end.  But I finished.

The 11 month injections was easier until about the last month.  I was exhausted, sometimes had nausea, and had muscle aches.  Coffee and compizene were very helpful.  The muscle aches were generally for the day after the injection and could be controled with Tylenol.  I lost 35 pounds during this phase. (I am a Big guy, and was a little obese when I started)  I finished the 11 months.

Some of the other posters are right.  You may or may not have the same symptoms as I did when being on it.  Your resons for choosing/not choosing maybe different.  For me it was my son, and I am not willing to sit around waiting to see if it comes back.  I am going to do everything possible to win this fight. I would rather try something than nothing at all.  I reminded myself of those choices every day I was in treatment.  It helped me get though some of the tougher days.

It is my hope that you let us know what your decision is, and look forward to seeing more posts from you.

 

MikeWI

stage 2c – currently NED

I am about three weeks out from finishing Interferon.  For me it was tough but manageable.  I WOULD DO IT AGAIN FOR THE SAME REASONS.

When deciding wheteher to do it or not,  my choosing was based on two reasons

1.  I have a son, I need to be here for him.  My oncologist indicated that interferon was a way of it.  To prolong my life until the research currently in trial right now is available as treatment.  Also I read a post from a women on this web site that interferon was able to delay her reoccurance for 11 years.

2,  My tumor was ulcerated and interferon is 60 percent more effective on ulcerated tumors.  Someone on this web site sent me a link of a study in california that based on data indicated this.

The 30 day induction was tough.  I was tired, sick and cold pretty much every day.  I dropped 30 pounds in that time and was very weak by the end.  But I finished.

The 11 month injections was easier until about the last month.  I was exhausted, sometimes had nausea, and had muscle aches.  Coffee and compizene were very helpful.  The muscle aches were generally for the day after the injection and could be controled with Tylenol.  I lost 35 pounds during this phase. (I am a Big guy, and was a little obese when I started)  I finished the 11 months.

Some of the other posters are right.  You may or may not have the same symptoms as I did when being on it.  Your resons for choosing/not choosing maybe different.  For me it was my son, and I am not willing to sit around waiting to see if it comes back.  I am going to do everything possible to win this fight. I would rather try something than nothing at all.  I reminded myself of those choices every day I was in treatment.  It helped me get though some of the tougher days.

It is my hope that you let us know what your decision is, and look forward to seeing more posts from you.

 

MikeWI

stage 2c – currently NED

I am about three weeks out from finishing Interferon.  For me it was tough but manageable.  I WOULD DO IT AGAIN FOR THE SAME REASONS.

When deciding wheteher to do it or not,  my choosing was based on two reasons

1.  I have a son, I need to be here for him.  My oncologist indicated that interferon was a way of it.  To prolong my life until the research currently in trial right now is available as treatment.  Also I read a post from a women on this web site that interferon was able to delay her reoccurance for 11 years.

2,  My tumor was ulcerated and interferon is 60 percent more effective on ulcerated tumors.  Someone on this web site sent me a link of a study in california that based on data indicated this.

The 30 day induction was tough.  I was tired, sick and cold pretty much every day.  I dropped 30 pounds in that time and was very weak by the end.  But I finished.

The 11 month injections was easier until about the last month.  I was exhausted, sometimes had nausea, and had muscle aches.  Coffee and compizene were very helpful.  The muscle aches were generally for the day after the injection and could be controled with Tylenol.  I lost 35 pounds during this phase. (I am a Big guy, and was a little obese when I started)  I finished the 11 months.

Some of the other posters are right.  You may or may not have the same symptoms as I did when being on it.  Your resons for choosing/not choosing maybe different.  For me it was my son, and I am not willing to sit around waiting to see if it comes back.  I am going to do everything possible to win this fight. I would rather try something than nothing at all.  I reminded myself of those choices every day I was in treatment.  It helped me get though some of the tougher days.

It is my hope that you let us know what your decision is, and look forward to seeing more posts from you.

 

MikeWI

stage 2c – currently NED

Hi Colleen

I've been reading your posts and have nothing to offer on interferon.  While my husband was waiting to start it, he developed new tumors overnight that were extremely aggressive and is now undgergoing carbo/taxol with good results so far.  However, I understand EXACTLY your concerns as a caregiver and being the one informed.  Initially, I had to fight tooth and nail to get my husband to do what he had to do.  Like yours, he felt that once the surgery was completed (his is nasal mucosal) with clear margins, that there was no hurry to do more.  His is a complicated case with a second primary lung cancer which has significanlty delayed things.  The day he woke up with the tumors all over his neck he was livid with me for making sure he called a doctor.  When he developed pain along the area, he gave me a hard time about going to the ER 2 hours away as instructed by the doctor.  He has a "go with the flow" attitude and has done no research at all.  Like you, I am all over the place searching for help and information and I have about a million questions. I've got my own medical file going with all the scans, reports and so on that I can get my hands on because sometimes those things have a way of disappearing at the medical places and you never know when they might need them.  And you're right.  This does affect the entire famliy's life in a big way.  I haven't been able to plan anything for myself in 5 months.  It's not uncommon for us to be at a doctor's office or hospital 2 or 3 times a week, sometimes 2 hours away, and they change everything at the last minute.  It's taken it's toll already.  My blood pressure, blood sugar and weight are all up.  It's hard financially.  My husband is the breadwinner and I work two part time jobs.  I'm worried sick about everything.  I'd like to get another job but I can't because I can't be depended on for anything.  He finally is cooperating in doing what he needs to do without all the added stress on me making him do it.  If you can hire an employee for your farm, go for it.  I suppose this post is not very helpful but perhaps it will help you to realize that our feelings and concerns in this mess may be normal.  I don't know.  But when I began reading your posts I began to feel that yes, there is someone out there going through the same type of situation with their husband's way of dealing with things as I am.  I'm beginning to think that it is just as hard on us sometimes but in a very different way.  Until I read your posts I was thinking that maybe I'm nuts for feeling as I do.  My sister likes to tell me at every opportunity to think of what my husband is going through and not of what the rest of us are going through.  Well, I do!  I think of all he's had to go through and whay may happen next.  I'm worried that he may not live to see our son get married next year, or our other son graduate from college if we can even pay to get him through, or that the insurance won't pay for needed treatments and he will be left to die because we don't have the money to pay for it ourselves.  That thought is more than I can bear.   I worry about how I'm ever going to support us if he can't.  Sometimes I picture me, the dog, and the cat living in a carboard box!  The one thing I try very hard to do is to not let my husband know any of this.  In some ways, I feel that if he feels good and has a good attitude and is oblivious to things that could happen that it might be better for him.  I'm trying to just let him be happy.  Our kids are older than yours so we have been able to talk a lot of this out between ourselves.  It's still extremely frustrating though when the patient just doesn't seem to get it sometimes.  He'll tell me that the dog needs to go to the vet and I'll ask "When?  Exactly when do you think I could make an appointment that I could actually keep?".  Good luck.  I wish you and your husband and family the best.

Hi Colleen

I've been reading your posts and have nothing to offer on interferon.  While my husband was waiting to start it, he developed new tumors overnight that were extremely aggressive and is now undgergoing carbo/taxol with good results so far.  However, I understand EXACTLY your concerns as a caregiver and being the one informed.  Initially, I had to fight tooth and nail to get my husband to do what he had to do.  Like yours, he felt that once the surgery was completed (his is nasal mucosal) with clear margins, that there was no hurry to do more.  His is a complicated case with a second primary lung cancer which has significanlty delayed things.  The day he woke up with the tumors all over his neck he was livid with me for making sure he called a doctor.  When he developed pain along the area, he gave me a hard time about going to the ER 2 hours away as instructed by the doctor.  He has a "go with the flow" attitude and has done no research at all.  Like you, I am all over the place searching for help and information and I have about a million questions. I've got my own medical file going with all the scans, reports and so on that I can get my hands on because sometimes those things have a way of disappearing at the medical places and you never know when they might need them.  And you're right.  This does affect the entire famliy's life in a big way.  I haven't been able to plan anything for myself in 5 months.  It's not uncommon for us to be at a doctor's office or hospital 2 or 3 times a week, sometimes 2 hours away, and they change everything at the last minute.  It's taken it's toll already.  My blood pressure, blood sugar and weight are all up.  It's hard financially.  My husband is the breadwinner and I work two part time jobs.  I'm worried sick about everything.  I'd like to get another job but I can't because I can't be depended on for anything.  He finally is cooperating in doing what he needs to do without all the added stress on me making him do it.  If you can hire an employee for your farm, go for it.  I suppose this post is not very helpful but perhaps it will help you to realize that our feelings and concerns in this mess may be normal.  I don't know.  But when I began reading your posts I began to feel that yes, there is someone out there going through the same type of situation with their husband's way of dealing with things as I am.  I'm beginning to think that it is just as hard on us sometimes but in a very different way.  Until I read your posts I was thinking that maybe I'm nuts for feeling as I do.  My sister likes to tell me at every opportunity to think of what my husband is going through and not of what the rest of us are going through.  Well, I do!  I think of all he's had to go through and whay may happen next.  I'm worried that he may not live to see our son get married next year, or our other son graduate from college if we can even pay to get him through, or that the insurance won't pay for needed treatments and he will be left to die because we don't have the money to pay for it ourselves.  That thought is more than I can bear.   I worry about how I'm ever going to support us if he can't.  Sometimes I picture me, the dog, and the cat living in a carboard box!  The one thing I try very hard to do is to not let my husband know any of this.  In some ways, I feel that if he feels good and has a good attitude and is oblivious to things that could happen that it might be better for him.  I'm trying to just let him be happy.  Our kids are older than yours so we have been able to talk a lot of this out between ourselves.  It's still extremely frustrating though when the patient just doesn't seem to get it sometimes.  He'll tell me that the dog needs to go to the vet and I'll ask "When?  Exactly when do you think I could make an appointment that I could actually keep?".  Good luck.  I wish you and your husband and family the best.

Hi Colleen

I've been reading your posts and have nothing to offer on interferon.  While my husband was waiting to start it, he developed new tumors overnight that were extremely aggressive and is now undgergoing carbo/taxol with good results so far.  However, I understand EXACTLY your concerns as a caregiver and being the one informed.  Initially, I had to fight tooth and nail to get my husband to do what he had to do.  Like yours, he felt that once the surgery was completed (his is nasal mucosal) with clear margins, that there was no hurry to do more.  His is a complicated case with a second primary lung cancer which has significanlty delayed things.  The day he woke up with the tumors all over his neck he was livid with me for making sure he called a doctor.  When he developed pain along the area, he gave me a hard time about going to the ER 2 hours away as instructed by the doctor.  He has a "go with the flow" attitude and has done no research at all.  Like you, I am all over the place searching for help and information and I have about a million questions. I've got my own medical file going with all the scans, reports and so on that I can get my hands on because sometimes those things have a way of disappearing at the medical places and you never know when they might need them.  And you're right.  This does affect the entire famliy's life in a big way.  I haven't been able to plan anything for myself in 5 months.  It's not uncommon for us to be at a doctor's office or hospital 2 or 3 times a week, sometimes 2 hours away, and they change everything at the last minute.  It's taken it's toll already.  My blood pressure, blood sugar and weight are all up.  It's hard financially.  My husband is the breadwinner and I work two part time jobs.  I'm worried sick about everything.  I'd like to get another job but I can't because I can't be depended on for anything.  He finally is cooperating in doing what he needs to do without all the added stress on me making him do it.  If you can hire an employee for your farm, go for it.  I suppose this post is not very helpful but perhaps it will help you to realize that our feelings and concerns in this mess may be normal.  I don't know.  But when I began reading your posts I began to feel that yes, there is someone out there going through the same type of situation with their husband's way of dealing with things as I am.  I'm beginning to think that it is just as hard on us sometimes but in a very different way.  Until I read your posts I was thinking that maybe I'm nuts for feeling as I do.  My sister likes to tell me at every opportunity to think of what my husband is going through and not of what the rest of us are going through.  Well, I do!  I think of all he's had to go through and whay may happen next.  I'm worried that he may not live to see our son get married next year, or our other son graduate from college if we can even pay to get him through, or that the insurance won't pay for needed treatments and he will be left to die because we don't have the money to pay for it ourselves.  That thought is more than I can bear.   I worry about how I'm ever going to support us if he can't.  Sometimes I picture me, the dog, and the cat living in a carboard box!  The one thing I try very hard to do is to not let my husband know any of this.  In some ways, I feel that if he feels good and has a good attitude and is oblivious to things that could happen that it might be better for him.  I'm trying to just let him be happy.  Our kids are older than yours so we have been able to talk a lot of this out between ourselves.  It's still extremely frustrating though when the patient just doesn't seem to get it sometimes.  He'll tell me that the dog needs to go to the vet and I'll ask "When?  Exactly when do you think I could make an appointment that I could actually keep?".  Good luck.  I wish you and your husband and family the best.

Hello 🙂 My husband is 3b and got diagnosed October 2011.  He is 38 years old and a hand welder at a factory that makes automotive parts. He  just got done with the 1 month high dose interferon in June. He chose not to do the 11 months of shots. I can't say that I wanted him to stop treatment but I had to listen to what he wanted because as we all know I am a big part of this melanoma journey with him but he is the one going through the actual treatment. While he was on interferon he did not work for the whole month…he did try a couple of day to go to work but ended up coming home due to dizziness,fever ect…He did have some good days after we learned what times to do tylenol and nausea meds. (By the way…we ended up getting our DR to give my husband hydrocodone due to tylenol wasn't taking care of his body aches…many ppl do stick to the tylenol though)  After about the first 3 or 4 days we knew not to go but so many hours without meds or the side effects of the interferon would be very bad. He had some days of fever, chills, nausea no matter what meds we did. I know everyone is different but I think your husband can def do this but as far as work I can't tell you…but I know that my husband couldn't work and take these treatments. I know several ppl that have worked with office jobs but your husband doesn't have an office job so it could be much harder for him to be up on his feet working all day. He will needs alot of rest after starting these treatments. Get ready for a long month or year whichever you guys decide to do. Good luck! When will he be starting treatment?

 

mandi

Hello 🙂 My husband is 3b and got diagnosed October 2011.  He is 38 years old and a hand welder at a factory that makes automotive parts. He  just got done with the 1 month high dose interferon in June. He chose not to do the 11 months of shots. I can't say that I wanted him to stop treatment but I had to listen to what he wanted because as we all know I am a big part of this melanoma journey with him but he is the one going through the actual treatment. While he was on interferon he did not work for the whole month…he did try a couple of day to go to work but ended up coming home due to dizziness,fever ect…He did have some good days after we learned what times to do tylenol and nausea meds. (By the way…we ended up getting our DR to give my husband hydrocodone due to tylenol wasn't taking care of his body aches…many ppl do stick to the tylenol though)  After about the first 3 or 4 days we knew not to go but so many hours without meds or the side effects of the interferon would be very bad. He had some days of fever, chills, nausea no matter what meds we did. I know everyone is different but I think your husband can def do this but as far as work I can't tell you…but I know that my husband couldn't work and take these treatments. I know several ppl that have worked with office jobs but your husband doesn't have an office job so it could be much harder for him to be up on his feet working all day. He will needs alot of rest after starting these treatments. Get ready for a long month or year whichever you guys decide to do. Good luck! When will he be starting treatment?

 

mandi

Hello 🙂 My husband is 3b and got diagnosed October 2011.  He is 38 years old and a hand welder at a factory that makes automotive parts. He  just got done with the 1 month high dose interferon in June. He chose not to do the 11 months of shots. I can't say that I wanted him to stop treatment but I had to listen to what he wanted because as we all know I am a big part of this melanoma journey with him but he is the one going through the actual treatment. While he was on interferon he did not work for the whole month…he did try a couple of day to go to work but ended up coming home due to dizziness,fever ect…He did have some good days after we learned what times to do tylenol and nausea meds. (By the way…we ended up getting our DR to give my husband hydrocodone due to tylenol wasn't taking care of his body aches…many ppl do stick to the tylenol though)  After about the first 3 or 4 days we knew not to go but so many hours without meds or the side effects of the interferon would be very bad. He had some days of fever, chills, nausea no matter what meds we did. I know everyone is different but I think your husband can def do this but as far as work I can't tell you…but I know that my husband couldn't work and take these treatments. I know several ppl that have worked with office jobs but your husband doesn't have an office job so it could be much harder for him to be up on his feet working all day. He will needs alot of rest after starting these treatments. Get ready for a long month or year whichever you guys decide to do. Good luck! When will he be starting treatment?

 

mandi

Hello 🙂 My husband is 3b and got diagnosed October 2011.  He is 38 years old and a hand welder at a factory that makes automotive parts. He  just got done with the 1 month high dose interferon in June. He chose not to do the 11 months of shots. I can't say that I wanted him to stop treatment but I had to listen to what he wanted because as we all know I am a big part of this melanoma journey with him but he is the one going through the actual treatment. While he was on interferon he did not work for the whole month…he did try a couple of day to go to work but ended up coming home due to dizziness,fever ect…He did have some good days after we learned what times to do tylenol and nausea meds. (By the way…we ended up getting our DR to give my husband hydrocodone due to tylenol wasn't taking care of his body aches…many ppl do stick to the tylenol though)  After about the first 3 or 4 days we knew not to go but so many hours without meds or the side effects of the interferon would be very bad. He had some days of fever, chills, nausea no matter what meds we did. I know everyone is different but I think your husband can def do this but as far as work I can't tell you…but I know that my husband couldn't work and take these treatments. I know several ppl that have worked with office jobs but your husband doesn't have an office job so it could be much harder for him to be up on his feet working all day. He will needs alot of rest after starting these treatments. Get ready for a long month or year whichever you guys decide to do. Good luck! When will he be starting treatment?

 

mandi

Hello 🙂 My husband is 3b and got diagnosed October 2011.  He is 38 years old and a hand welder at a factory that makes automotive parts. He  just got done with the 1 month high dose interferon in June. He chose not to do the 11 months of shots. I can't say that I wanted him to stop treatment but I had to listen to what he wanted because as we all know I am a big part of this melanoma journey with him but he is the one going through the actual treatment. While he was on interferon he did not work for the whole month…he did try a couple of day to go to work but ended up coming home due to dizziness,fever ect…He did have some good days after we learned what times to do tylenol and nausea meds. (By the way…we ended up getting our DR to give my husband hydrocodone due to tylenol wasn't taking care of his body aches…many ppl do stick to the tylenol though)  After about the first 3 or 4 days we knew not to go but so many hours without meds or the side effects of the interferon would be very bad. He had some days of fever, chills, nausea no matter what meds we did. I know everyone is different but I think your husband can def do this but as far as work I can't tell you…but I know that my husband couldn't work and take these treatments. I know several ppl that have worked with office jobs but your husband doesn't have an office job so it could be much harder for him to be up on his feet working all day. He will needs alot of rest after starting these treatments. Get ready for a long month or year whichever you guys decide to do. Good luck! When will he be starting treatment?

 

mandi

Hello 🙂 My husband is 3b and got diagnosed October 2011.  He is 38 years old and a hand welder at a factory that makes automotive parts. He  just got done with the 1 month high dose interferon in June. He chose not to do the 11 months of shots. I can't say that I wanted him to stop treatment but I had to listen to what he wanted because as we all know I am a big part of this melanoma journey with him but he is the one going through the actual treatment. While he was on interferon he did not work for the whole month…he did try a couple of day to go to work but ended up coming home due to dizziness,fever ect…He did have some good days after we learned what times to do tylenol and nausea meds. (By the way…we ended up getting our DR to give my husband hydrocodone due to tylenol wasn't taking care of his body aches…many ppl do stick to the tylenol though)  After about the first 3 or 4 days we knew not to go but so many hours without meds or the side effects of the interferon would be very bad. He had some days of fever, chills, nausea no matter what meds we did. I know everyone is different but I think your husband can def do this but as far as work I can't tell you…but I know that my husband couldn't work and take these treatments. I know several ppl that have worked with office jobs but your husband doesn't have an office job so it could be much harder for him to be up on his feet working all day. He will needs alot of rest after starting these treatments. Get ready for a long month or year whichever you guys decide to do. Good luck! When will he be starting treatment?

 

mandi

Colleen,

I was diagnosed wth MM in 9/09 (Stage 3A, , left shoulder, with micro mets to one lympnode, had a WLE, SNB and lymphendectomy) and elected to do only the 4 weeks high dose interferon. based on discussions with a couple of doctors. At the time I was a physically active, 50 year old woman and interferon was the only adjuvant treatment available.  I read the list of possible side effects and felt I could withstand most of them. My experience was very similar to those provided in previous posts – fatigue, chills,headache, loss of appetite, lack of concentration/focus and just a general malaise. I could not have worked during the treatment and feel lucky that I had the option to take a medical leave.

One side effect that I did not see mentioned much in the previous posts, but I was informed of it in advance and definitely experienced it, was depression. I'd never encountered it before, and it really took me by surprise, but on further research I found that it can acutally be caused by interfereon, so please be aware of that. If your husband choses this path, think hard about starting on some anti-depressant prior to the treatments. It can really take you down, and that is the last thing he needs when he is trying to fight MM and take interferon.

Praying that you are both blessed with good information, and the best care.

Patricia

Colleen,

I was diagnosed wth MM in 9/09 (Stage 3A, , left shoulder, with micro mets to one lympnode, had a WLE, SNB and lymphendectomy) and elected to do only the 4 weeks high dose interferon. based on discussions with a couple of doctors. At the time I was a physically active, 50 year old woman and interferon was the only adjuvant treatment available.  I read the list of possible side effects and felt I could withstand most of them. My experience was very similar to those provided in previous posts – fatigue, chills,headache, loss of appetite, lack of concentration/focus and just a general malaise. I could not have worked during the treatment and feel lucky that I had the option to take a medical leave.

One side effect that I did not see mentioned much in the previous posts, but I was informed of it in advance and definitely experienced it, was depression. I'd never encountered it before, and it really took me by surprise, but on further research I found that it can acutally be caused by interfereon, so please be aware of that. If your husband choses this path, think hard about starting on some anti-depressant prior to the treatments. It can really take you down, and that is the last thing he needs when he is trying to fight MM and take interferon.

Praying that you are both blessed with good information, and the best care.

Patricia

Colleen,

I was diagnosed wth MM in 9/09 (Stage 3A, , left shoulder, with micro mets to one lympnode, had a WLE, SNB and lymphendectomy) and elected to do only the 4 weeks high dose interferon. based on discussions with a couple of doctors. At the time I was a physically active, 50 year old woman and interferon was the only adjuvant treatment available.  I read the list of possible side effects and felt I could withstand most of them. My experience was very similar to those provided in previous posts – fatigue, chills,headache, loss of appetite, lack of concentration/focus and just a general malaise. I could not have worked during the treatment and feel lucky that I had the option to take a medical leave.

One side effect that I did not see mentioned much in the previous posts, but I was informed of it in advance and definitely experienced it, was depression. I'd never encountered it before, and it really took me by surprise, but on further research I found that it can acutally be caused by interfereon, so please be aware of that. If your husband choses this path, think hard about starting on some anti-depressant prior to the treatments. It can really take you down, and that is the last thing he needs when he is trying to fight MM and take interferon.

Praying that you are both blessed with good information, and the best care.

Patricia