The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Advice on how to get through interferon

Forums Cutaneous Melanoma Community Advice on how to get through interferon

  • Post
    DebC
    Participant

     

    This is my first time posting on the bulletin board.  I have read many of your conversations over the past 3 months and so have already benefited from your knowledge, guidance, compassion, and spirit.  I am very grateful for your generosity and your support already.  I am finally posting today with some questions and concerns about getting through interferon but here’s a bit of background first.

     

     

    This is my first time posting on the bulletin board.  I have read many of your conversations over the past 3 months and so have already benefited from your knowledge, guidance, compassion, and spirit.  I am very grateful for your generosity and your support already.  I am finally posting today with some questions and concerns about getting through interferon but here’s a bit of background first.

     

    I am the wife of a very dear 60-year old man who was diagnosed with melanoma in December 2010.  He had surgery for a very large lesion on his back on December 10th that his primary doc had, unfortunately dismissed 2 months before.  His cancer has been staged as IIC; the thickness of the tumor was 32 millimeters (yes, you read that correctly) and it was ulcerated.  We were greatly relieved that he had clear PET and brain scans but they were unable to do a SNLB because of the size of the surgical wound on his back.   After sufficient recovery from the initial surgery he had a skin graft in January to complete the healing.  Our medical oncologist here in Maine referred us to the melanoma clinic at Mass General where we saw Dr. Lawrence and his team.  As you all might imagine, the recommendation was a yearlong course of interferon, given the ‘worrisome’ nature of his tumor.

    He completed the 4-week, 20-day marathon a week ago Friday at the Alfond Cancer Center here in Maine and, as so many of you know, the fatigue was beyond what we could ever have imagined.  After the second week there was no ‘bounce back’ over the weekend and he essentially stopped eating; he had no appetite and lost his taste for food.  It was a very hard month, to say the least but we’ve found this past week to be almost more discouraging and disconcerting.  The exhaustion has continued (he started the 3x/week injections last Monday); he has had no appreciable gain in energy until perhaps today.  His appetite has returned a bit but, for a man who loves all sorts of food, he is being very careful in what he tries to eat.  He wants to return to work – an administrative job – but is wondering how he’ll ever get through a day – or even half a day.  We have felt confident about the decision to go ahead with the interferon treatment but the year ahead looks very bleak at the moment.

    So, we would appreciate any advice on how to get through the long haul of interferon – what to expect and what has helped you or your loved ones with the fatigue, appetite issues, and anything else.  We are also concerned about what to watch for as the weeks and months go on – as we are ever worried about where this nasty disease might be lurking.

    Thank you so much.

    Deb C

    Loading spinner
Viewing 17 reply threads
  • Replies
      mayeast
      Participant

      I had a very similar scenerio. I had a 5 hour surgery and reconstruction done on my back last August. I see a dermatologist a every 6 months, so I was surprised by the diagnosis. I only mamged Interferon for 16 out of 20 weeks because of blood levels. Theother side -effects became less bothersome, but the oncologist agreed that to continue with injections was not worth it. ( 7% reduction in likelihood of recurrence.) I stopped Interferon in Dec. By Jan. my CAT scan showed METs in liver, lung, chest. I waited 4 weeks for results to qualify for the Gene test to come back, but I am F-RAF neg. I can't do IPI because of colitis 30 years ago. I switched to Atlantic Health last week and already started E7080, 3 pills once a day.There is so many exclusions to certain trials, so choose wisely what you do next. All my best to you. Keep me posted.

      Loading spinner
      mayeast
      Participant

      I had a very similar scenerio. I had a 5 hour surgery and reconstruction done on my back last August. I see a dermatologist a every 6 months, so I was surprised by the diagnosis. I only mamged Interferon for 16 out of 20 weeks because of blood levels. Theother side -effects became less bothersome, but the oncologist agreed that to continue with injections was not worth it. ( 7% reduction in likelihood of recurrence.) I stopped Interferon in Dec. By Jan. my CAT scan showed METs in liver, lung, chest. I waited 4 weeks for results to qualify for the Gene test to come back, but I am F-RAF neg. I can't do IPI because of colitis 30 years ago. I switched to Atlantic Health last week and already started E7080, 3 pills once a day.There is so many exclusions to certain trials, so choose wisely what you do next. All my best to you. Keep me posted.

      Loading spinner
      Phil S
      Participant

      Deb     Our doctor's office told us that the average man will lose around 25 pounds during the year of interferon.  My husband has lost a little more, but is doing well, with only six weeks to go to complete his year.  His taste buds definitely changed, and its a struggle to get him to eat certain foods he use to love.  I find that Whey Protein shakes are a great way to get him to drink something that helps with nutrients and he likes the taste.  We got both the strawberry and chocolate flavors then add to the blender a banana and frozen strawberries and make the drink with almond milk.  Just an idea that has worked for us, but try anything that your husband says tastes good to him.  For some reason, my husband also still loves pizza, so we just go with it and he has pizza whenever he wants it. 

      I would give the low dose injections, another few weeks, and have him try to change up the day and/or time he gives himself shots.  Some people like to give themselves shots around 7 or 8PM then go right to bed for the evening, and hopefully they feel better by morning.  My husband's fatigue has definitely lessened over the course of the year and he has been able to work without any problem.  However, that being said, he is only 47 years old, and I think his age has helped.  Also, we have been fortunate with few other side effects.  You and your husband have to decide how interferon affects your quality of life.  If he is still having trouble functioning in another few weeks, then talk to your doctor, maybe his counts are too low, maybe he just needs to have his interferon dosage reduced, maybe he is depressed  (a common side effect), or maybe you will decide that the full year of interferon isn't for him.  I think its great that your husband made it through the high dose month.  No matter what decision you both make, don't look back, we are all doing the best we can, and everybody reacts so differently.  This Board is a great place for support, so come back here again and tell us how he is doing.  I wish you both the very best.  Valerie (Phil's wife)

      Loading spinner
      Phil S
      Participant

      Deb     Our doctor's office told us that the average man will lose around 25 pounds during the year of interferon.  My husband has lost a little more, but is doing well, with only six weeks to go to complete his year.  His taste buds definitely changed, and its a struggle to get him to eat certain foods he use to love.  I find that Whey Protein shakes are a great way to get him to drink something that helps with nutrients and he likes the taste.  We got both the strawberry and chocolate flavors then add to the blender a banana and frozen strawberries and make the drink with almond milk.  Just an idea that has worked for us, but try anything that your husband says tastes good to him.  For some reason, my husband also still loves pizza, so we just go with it and he has pizza whenever he wants it. 

      I would give the low dose injections, another few weeks, and have him try to change up the day and/or time he gives himself shots.  Some people like to give themselves shots around 7 or 8PM then go right to bed for the evening, and hopefully they feel better by morning.  My husband's fatigue has definitely lessened over the course of the year and he has been able to work without any problem.  However, that being said, he is only 47 years old, and I think his age has helped.  Also, we have been fortunate with few other side effects.  You and your husband have to decide how interferon affects your quality of life.  If he is still having trouble functioning in another few weeks, then talk to your doctor, maybe his counts are too low, maybe he just needs to have his interferon dosage reduced, maybe he is depressed  (a common side effect), or maybe you will decide that the full year of interferon isn't for him.  I think its great that your husband made it through the high dose month.  No matter what decision you both make, don't look back, we are all doing the best we can, and everybody reacts so differently.  This Board is a great place for support, so come back here again and tell us how he is doing.  I wish you both the very best.  Valerie (Phil's wife)

      Loading spinner
      triciad
      Participant

      Hi Deb,

      Interferon can definitely be a beast.  I finished my yearlong treatments on October 30th.  I'm stage 3B.  It wasn't a great year, but it was doable for me.  I was able to teach first grade throughout the entire treatment; however, interferon effects people differently.  I also had the summer off (months 9+10), but I did a lot of "work" around the house.  Here are some of the things that helped me get through it; I hope some will help your husband, too.

      – drink PLENTY of water – at least 64 ounces/day.

      – eat whatever you can keep down – even if it's a whole Sara Lee poundcake – your body needs the fuel

      – lemons, slurpees, pasta helped me alot

      – anything with vinegar made me sick

      – definitely lost taste for food and appetite, but you have to get whatever down that will stay down.

      – I gave myself my shots around 7:00 with 2 Tylenol and 1 Benadryl…then went to bed

      – slept until 6:30 each morning, so at least 11 hours of sleep/day

      I gave my shots on Tuesdays, Thursdays, and Saturdays.  This way during the week, Wed and Friday were a little rougher, but Monday and Tuesdays were pretty good.  The bottom line is that I gave myself over to Interferon for the year.  I didn't go out much, especially to night functions.  I knew it was too tough on my body, and I wanted to give my body every chance to make the full year.  I did…with no regrets.  Now, whatever happens is in God's hands, but I gave it my all.

      Best of luck to your husband (and you, it's tough for family!).  Keep us posted and let me know if you have any other questions.  God bless!

      Tricia

      Loading spinner
        Laurie from maine
        Participant

        Hi,

        I am sorry he and you are going thru this.  I found the low dose much harder for me – the high dose was easy for me for some reason.  I lost 20 pounds and developed trouble breathing as time went on along with the fatigue.  I only made it 4 months before my liver counldnt tolerate it anymore so had to stop.(I have been off interferon and all side effects have gone away and NED)

        But during that time I did find that a lot of food tasted like it had spoiled and gone bad.  So I totally agree I just ate whatever I could get down.  For me I could actually tolerate eggs, bananas, and small quantities of whatever I ate.  I definitely allowed myself to eat anything that appealed to me – for example pop tarts was something I definitely enjoyed.   Definitely keep up the fluids and I always drank one gatorade a day just to keep up with hydration.   I gave myself shots fri, sun, tues trying to make my recovery days during the week so I could work.   And of course rest is key – there were some days I just had to take a nap.

        good luck

        laurie from maine 3C

        Loading spinner
        Oregon Wife
        Participant

        My Husband will start his 4th week Today .His taste buds are so messed up and can`t find anything that taste good and when he does eat his stomach cramps so bad.He has lost 15lbs  and is very weak that he cannot work.He said there is No Way he is going to do the 11 months and will be lucky to finish this week.Will have scans and tests every 3 months and Pray for the best. If I would have known it was going to be this bad, I would never have talked him into it and now pray that the high dose did some good at least…..Good Luck to you all.

        Penny

        Loading spinner
        Oregon Wife
        Participant

        My Husband will start his 4th week Today .His taste buds are so messed up and can`t find anything that taste good and when he does eat his stomach cramps so bad.He has lost 15lbs  and is very weak that he cannot work.He said there is No Way he is going to do the 11 months and will be lucky to finish this week.Will have scans and tests every 3 months and Pray for the best. If I would have known it was going to be this bad, I would never have talked him into it and now pray that the high dose did some good at least…..Good Luck to you all.

        Penny

        Loading spinner
        Laurie from maine
        Participant

        Hi,

        I am sorry he and you are going thru this.  I found the low dose much harder for me – the high dose was easy for me for some reason.  I lost 20 pounds and developed trouble breathing as time went on along with the fatigue.  I only made it 4 months before my liver counldnt tolerate it anymore so had to stop.(I have been off interferon and all side effects have gone away and NED)

        But during that time I did find that a lot of food tasted like it had spoiled and gone bad.  So I totally agree I just ate whatever I could get down.  For me I could actually tolerate eggs, bananas, and small quantities of whatever I ate.  I definitely allowed myself to eat anything that appealed to me – for example pop tarts was something I definitely enjoyed.   Definitely keep up the fluids and I always drank one gatorade a day just to keep up with hydration.   I gave myself shots fri, sun, tues trying to make my recovery days during the week so I could work.   And of course rest is key – there were some days I just had to take a nap.

        good luck

        laurie from maine 3C

        Loading spinner
      triciad
      Participant

      Hi Deb,

      Interferon can definitely be a beast.  I finished my yearlong treatments on October 30th.  I'm stage 3B.  It wasn't a great year, but it was doable for me.  I was able to teach first grade throughout the entire treatment; however, interferon effects people differently.  I also had the summer off (months 9+10), but I did a lot of "work" around the house.  Here are some of the things that helped me get through it; I hope some will help your husband, too.

      – drink PLENTY of water – at least 64 ounces/day.

      – eat whatever you can keep down – even if it's a whole Sara Lee poundcake – your body needs the fuel

      – lemons, slurpees, pasta helped me alot

      – anything with vinegar made me sick

      – definitely lost taste for food and appetite, but you have to get whatever down that will stay down.

      – I gave myself my shots around 7:00 with 2 Tylenol and 1 Benadryl…then went to bed

      – slept until 6:30 each morning, so at least 11 hours of sleep/day

      I gave my shots on Tuesdays, Thursdays, and Saturdays.  This way during the week, Wed and Friday were a little rougher, but Monday and Tuesdays were pretty good.  The bottom line is that I gave myself over to Interferon for the year.  I didn't go out much, especially to night functions.  I knew it was too tough on my body, and I wanted to give my body every chance to make the full year.  I did…with no regrets.  Now, whatever happens is in God's hands, but I gave it my all.

      Best of luck to your husband (and you, it's tough for family!).  Keep us posted and let me know if you have any other questions.  God bless!

      Tricia

      Loading spinner
      FormerCaregiver
      Participant

      Welcome to this forum. I would just like to look at the bigger picture
      here. As I might have mentioned in a previous post, the nature of melanoma
      treatment is changing extremely fast.

      Interferon therapy has been around for a very long time, and perhaps this is
      why some doctors are recommending it. Unfortunately, it has significant side
      effects in many patients.

      Therefore, it is wise to be aware of the newer therapies that are becoming
      available through clinical trials. These are far more promising in what they
      are designed to achieve.

      Some of the prominent new treatments are:
      B-RAF kinase inhibitor PLX4032
      Ipi (ipilimumab)
      GM-CSF (Leukine)
      OncoVex
      Adoptive cell therapy

      There are some wonderful people in this forum who are having great results
      with some of these new treatments. Perhaps they would like to give their
      opinions on this important matter.

      Frank

      Loading spinner
      FormerCaregiver
      Participant

      Welcome to this forum. I would just like to look at the bigger picture
      here. As I might have mentioned in a previous post, the nature of melanoma
      treatment is changing extremely fast.

      Interferon therapy has been around for a very long time, and perhaps this is
      why some doctors are recommending it. Unfortunately, it has significant side
      effects in many patients.

      Therefore, it is wise to be aware of the newer therapies that are becoming
      available through clinical trials. These are far more promising in what they
      are designed to achieve.

      Some of the prominent new treatments are:
      B-RAF kinase inhibitor PLX4032
      Ipi (ipilimumab)
      GM-CSF (Leukine)
      OncoVex
      Adoptive cell therapy

      There are some wonderful people in this forum who are having great results
      with some of these new treatments. Perhaps they would like to give their
      opinions on this important matter.

      Frank

      Loading spinner
      DebC
      Participant

      A belated thank you to those of you who responded to my initial post.  The information, suggestions and support you all provided have been very helpful.  My husband has completed 4 weeks of the home injections and, although he has been able to get back to work some, he would say today that this injection phase seems to be harder than the month of daily infusions.  We keep hoping for a little window of energy on that second day after the 3 injections of the week are done but that has not been the case.  The fatigue just doesn't let up and, similar to others, he has developed a persistent cough and identifies with those of you who have described a 'brain fog'.  We are continuing on for now and hopeful that he may have a similar experience to that of Kelly's husband – who, in a response to another post, said that things got a bit better after week 4.  

      Onward…

      Deb

      Loading spinner
      DebC
      Participant

      A belated thank you to those of you who responded to my initial post.  The information, suggestions and support you all provided have been very helpful.  My husband has completed 4 weeks of the home injections and, although he has been able to get back to work some, he would say today that this injection phase seems to be harder than the month of daily infusions.  We keep hoping for a little window of energy on that second day after the 3 injections of the week are done but that has not been the case.  The fatigue just doesn't let up and, similar to others, he has developed a persistent cough and identifies with those of you who have described a 'brain fog'.  We are continuing on for now and hopeful that he may have a similar experience to that of Kelly's husband – who, in a response to another post, said that things got a bit better after week 4.  

      Onward…

      Deb

      Loading spinner
      ockelly
      Participant

      HI Deb

      Its Kelly.. yes things continue to be a bit better.  Starting week 8 of home injections.  I was quite discouraged at 4 weeks as I had been expecting it to get better and it seemed worse than the daily infusions.  I hope your husband starts to feel  some improvement.  TJ does have the chronic cough and his 3 month CT showed a strong immune response in his lungs… I wasn't surprised.  He has insomnia and extreme nighttime dry mouth (not only from the interferon, he had his parotid gland removed as part of his SLND).  Some of his insomnia is due to waking with dry mouth and having to go to the bathroom because he is drinking so much during the day.  We are looking into acupuncture for dry mouth relief.  He is not really one to try alternative treatments but if it helps him sleep he'll go for it.  His fatigue has really improved and only gets him if he has overdone it.  And he has frequent back aches.  He also developed an itchy rash on his torso but that has improved too.  I know it could be a lot worse.

      I'll tell you this… we went on vacation for spring break and it was hot.  He was SO sick!  We had been told that interferon and hot weather are not a good mix…  ugh!  We'll have to be really cautious when summer arrives.

      If you are giving the injections, I have a system that I like.  I started the first week on his left abdomen and gave the 3 injections there, trying to give them in a triangle so I'm not hitting the same spot twice.  Then the next week I moved to the right abdomen, then right back and left back.  So every 4 weeks we're back to the left abdomen.  It makes me feel like we're getting somewhere :)

      Take care and good luck,

      Kelly

      Loading spinner
      ockelly
      Participant

      HI Deb

      Its Kelly.. yes things continue to be a bit better.  Starting week 8 of home injections.  I was quite discouraged at 4 weeks as I had been expecting it to get better and it seemed worse than the daily infusions.  I hope your husband starts to feel  some improvement.  TJ does have the chronic cough and his 3 month CT showed a strong immune response in his lungs… I wasn't surprised.  He has insomnia and extreme nighttime dry mouth (not only from the interferon, he had his parotid gland removed as part of his SLND).  Some of his insomnia is due to waking with dry mouth and having to go to the bathroom because he is drinking so much during the day.  We are looking into acupuncture for dry mouth relief.  He is not really one to try alternative treatments but if it helps him sleep he'll go for it.  His fatigue has really improved and only gets him if he has overdone it.  And he has frequent back aches.  He also developed an itchy rash on his torso but that has improved too.  I know it could be a lot worse.

      I'll tell you this… we went on vacation for spring break and it was hot.  He was SO sick!  We had been told that interferon and hot weather are not a good mix…  ugh!  We'll have to be really cautious when summer arrives.

      If you are giving the injections, I have a system that I like.  I started the first week on his left abdomen and gave the 3 injections there, trying to give them in a triangle so I'm not hitting the same spot twice.  Then the next week I moved to the right abdomen, then right back and left back.  So every 4 weeks we're back to the left abdomen.  It makes me feel like we're getting somewhere :)

      Take care and good luck,

      Kelly

      Loading spinner
      CKasper
      Participant

      DO NOT DO IT>>>SEEK OTHER THERAPIES.

      Loading spinner
      CKasper
      Participant

      DO NOT DO IT>>>SEEK OTHER THERAPIES.

      Loading spinner
      BarbieGirl
      Participant

      Hi Deb, I'm so sorry your husband (and you) had to join our 'melasuckanoma" club, but you've found the best place online for support and knowledge—REAL people, not just stuff out of a book.

      I'm Stage 2B, and my onc. strongly recommended interferon.  Unfortunately, for stage 2'ers, there isn't a lot out there for us.  I made a whopping 8 weeks!  (1st month high-dose, with a couple of days off due to high liver enzymes and hives; and 1 month of the injections.)  For me, the injections were much worse than the high-dose, regarding side-effects..  I'm a wuss, I don't do pain, I had almost every side-effect possible, but the one that got me was the depression!!

      I STRONGLY suggest if your hubby isn't on an antidepressant, he get on one as soon as possible.  They take 2-3 weeks to kick in.  If I had to do it all over again, I'd start an antidepressant BEFORE the interferon.  Maybe I could have made it longer.  Maybe not.  I'm 10 years NED… did the interferon work?  Who knows?  I'd like to think it did.

      I have read that trials of just the first high-dose month versus the entire year have the same results.  That made ME feel better—I was feeling like a wuss and a quitter.  But I couldn't handle it any more.  When I told my onc I hated her f**king guts and thought she was trying to kill me, that's when she pulled it!  haha!

      I didn't lose weight on it—I actually had no problem eating, as long as it was something I wanted.  My poor hubby sometimes would go pick up something I wanted, I'd smell it and go "ugh", and he'd head out for something else.  Drinking was my problem.  I'm a coke-a-holic, and couldn't STAND them during interferon.  Even water was rough for me—just taking one sip made me feel like I had stuck a cotton ball in my mouth, and I could hardly swallow!   I MADE myself drink it though, along with iced-tea and my little bit of coffee with lots of cream and sugar.  

      I would take 2 extra-strength tylenol and 1 benedryl about 15 minutes before my IV or injections.  Fortunately, I have a great insurance plan, and nursing care came to my home for the high-dose IV part, and provided all the medicine and supplies.  I'd NEVER have made it if I'd had to GO in to get the IV part.   After about 2 minutes of being hooked up to the IV, I'd start shivering (fever); with the injections, it took about 10 minutes before the 'fever/chills" started.  I spent MONTHS in bed from the lingering fatigue and pain.  (I already had a horrible back to begin with.)  The nursing service continued to provide the meds and taught my hubby how to give me the shots.  (I couldn't even do that—I'm a WUSS, I tell ya!  Even my son, who was 16 at the time, gave me a few of my shots.)  A lot of folks said having the shots in the abdomen was less painful for them.. not me!  Hubby gave me ONE in the abdomen, and I was screaming "TAKE IT OUT!  You're puncturing an ovary or something!"  Of course he wasn't, but it sure felt like it!   So we did arms, legs and buttocks.

      There are many, many people here who have finished the whole year with practically zero side-effects.  I admire them so much!!  There was NO WAY I could have worked during my 8 weeks on the meds, or even months afterwards. Even after 10+ years (NED!!), I have a few continuing side-effects:  tremors in my hands and legs, fatigue, brain fog, and my vision's gone to crap.  Yes, I was 39 when I was diagnosed, and yes, most people's eyesight starts changing around age 40.  But I KNOW, without a doubt, the inf. caused my eyesight to change drastically.  My onc. told me to wait at least 6 months or more to even see an eye doc after the interferon, as my vision would continue to change for a while afterwards.  And it did.  At almost 50, my eyes changed 3 points in the last year alone.  Age?  Interferon?  Again, who knows. Before, I had perfect 20/20 vision.  Now, I have to wear corrective lenses while driving.

      Knowing what I know now, I WOULD try it again (but I'd make sure to have those antidepressants first!).  I STILL take them because I never, EVER want to go back to that dark place in my mind.  I've had to switch 'em up over the last 10 years, but I'm scared to pieces to get off of them.  I tried once, and the main way I can tell I have mega-problems without them, or they aren't working anymore, is I start having nightmares—-not dreams, but horrible nightmares that would wake me up and I'd be bawling like a baby. 

      1 in 4 (25%) who take interferon cannot tolerate it.  I fell in the 25% group, but like I said, if I'd been on antidepressants beforehand, I may have made longer, or even the year.  If your hubby isn't on antidepressants or anti-anxiety meds, I suggest he get on them yesterday!  It made all the difference in the world with me, but by the time they had kicked in, I was off the interferon.

      I wish your husband (and you) the best.  Please keep us updated on how he's doing, and how YOU are doing as caregiver.  Feel free to email if you need to chat, vent, whatever.  ( [email protected]

      Take care!

      ~Lisa~

      Loading spinner
      BarbieGirl
      Participant

      Hi Deb, I'm so sorry your husband (and you) had to join our 'melasuckanoma" club, but you've found the best place online for support and knowledge—REAL people, not just stuff out of a book.

      I'm Stage 2B, and my onc. strongly recommended interferon.  Unfortunately, for stage 2'ers, there isn't a lot out there for us.  I made a whopping 8 weeks!  (1st month high-dose, with a couple of days off due to high liver enzymes and hives; and 1 month of the injections.)  For me, the injections were much worse than the high-dose, regarding side-effects..  I'm a wuss, I don't do pain, I had almost every side-effect possible, but the one that got me was the depression!!

      I STRONGLY suggest if your hubby isn't on an antidepressant, he get on one as soon as possible.  They take 2-3 weeks to kick in.  If I had to do it all over again, I'd start an antidepressant BEFORE the interferon.  Maybe I could have made it longer.  Maybe not.  I'm 10 years NED… did the interferon work?  Who knows?  I'd like to think it did.

      I have read that trials of just the first high-dose month versus the entire year have the same results.  That made ME feel better—I was feeling like a wuss and a quitter.  But I couldn't handle it any more.  When I told my onc I hated her f**king guts and thought she was trying to kill me, that's when she pulled it!  haha!

      I didn't lose weight on it—I actually had no problem eating, as long as it was something I wanted.  My poor hubby sometimes would go pick up something I wanted, I'd smell it and go "ugh", and he'd head out for something else.  Drinking was my problem.  I'm a coke-a-holic, and couldn't STAND them during interferon.  Even water was rough for me—just taking one sip made me feel like I had stuck a cotton ball in my mouth, and I could hardly swallow!   I MADE myself drink it though, along with iced-tea and my little bit of coffee with lots of cream and sugar.  

      I would take 2 extra-strength tylenol and 1 benedryl about 15 minutes before my IV or injections.  Fortunately, I have a great insurance plan, and nursing care came to my home for the high-dose IV part, and provided all the medicine and supplies.  I'd NEVER have made it if I'd had to GO in to get the IV part.   After about 2 minutes of being hooked up to the IV, I'd start shivering (fever); with the injections, it took about 10 minutes before the 'fever/chills" started.  I spent MONTHS in bed from the lingering fatigue and pain.  (I already had a horrible back to begin with.)  The nursing service continued to provide the meds and taught my hubby how to give me the shots.  (I couldn't even do that—I'm a WUSS, I tell ya!  Even my son, who was 16 at the time, gave me a few of my shots.)  A lot of folks said having the shots in the abdomen was less painful for them.. not me!  Hubby gave me ONE in the abdomen, and I was screaming "TAKE IT OUT!  You're puncturing an ovary or something!"  Of course he wasn't, but it sure felt like it!   So we did arms, legs and buttocks.

      There are many, many people here who have finished the whole year with practically zero side-effects.  I admire them so much!!  There was NO WAY I could have worked during my 8 weeks on the meds, or even months afterwards. Even after 10+ years (NED!!), I have a few continuing side-effects:  tremors in my hands and legs, fatigue, brain fog, and my vision's gone to crap.  Yes, I was 39 when I was diagnosed, and yes, most people's eyesight starts changing around age 40.  But I KNOW, without a doubt, the inf. caused my eyesight to change drastically.  My onc. told me to wait at least 6 months or more to even see an eye doc after the interferon, as my vision would continue to change for a while afterwards.  And it did.  At almost 50, my eyes changed 3 points in the last year alone.  Age?  Interferon?  Again, who knows. Before, I had perfect 20/20 vision.  Now, I have to wear corrective lenses while driving.

      Knowing what I know now, I WOULD try it again (but I'd make sure to have those antidepressants first!).  I STILL take them because I never, EVER want to go back to that dark place in my mind.  I've had to switch 'em up over the last 10 years, but I'm scared to pieces to get off of them.  I tried once, and the main way I can tell I have mega-problems without them, or they aren't working anymore, is I start having nightmares—-not dreams, but horrible nightmares that would wake me up and I'd be bawling like a baby. 

      1 in 4 (25%) who take interferon cannot tolerate it.  I fell in the 25% group, but like I said, if I'd been on antidepressants beforehand, I may have made longer, or even the year.  If your hubby isn't on antidepressants or anti-anxiety meds, I suggest he get on them yesterday!  It made all the difference in the world with me, but by the time they had kicked in, I was off the interferon.

      I wish your husband (and you) the best.  Please keep us updated on how he's doing, and how YOU are doing as caregiver.  Feel free to email if you need to chat, vent, whatever.  ( [email protected]

      Take care!

      ~Lisa~

      Loading spinner
        Vermont_Donna
        Participant

        Hi,

        Because of an infected PICC line three days into the high dose infusions and a week long hospital stay, my oncologist had me just do 11 months of low dose injections. I chose not to work and I am glad I was at home to sleep when I needed to. I had a lot of fatigue. I would take two benedryl and two extra strength tylenol at bedtime and give my injection and off to sleep I would go. I usually took a 3 to 4 hour nap in the daytime. I didnt have brain fog too bad, but did find it hard to watch tv or read a book (And I love to read). I have a tendency to have depression and have been off and on antidepressants all my adult life, so I did go on one during the year and for a bit afterwards. I also was prescribed Ritalin to help with the fatigue and give me energy to do things. I did not have any bad side effects from either of these drugs. After I completed the year of Interferon I went off the Ritalin and antidepressant. I went back to work. I did have a re-occurrence a few months after this. You would have to review my profile to see exactly when that was, if interested, as I dont remember anymore.

        Good luck with your treatments. Its doable and many people have worked right through it, others like me, took the year off. If you are stage 3a cancer of more, you are quite possibly eligible for SSDI (if you have enough of a work history), as it is considered "internal cancer" by SSDI disability. I had no trouble getting SSDI at all, and when I go to work and make more than $1000 a month I call and it stops and when I make less I call and it kicks right back in. I also started receiving medicare 2 years after my eligibility for SSDI began.

        Vermont_Donna

        stage 3a

        Loading spinner
        Vermont_Donna
        Participant

        Hi,

        Because of an infected PICC line three days into the high dose infusions and a week long hospital stay, my oncologist had me just do 11 months of low dose injections. I chose not to work and I am glad I was at home to sleep when I needed to. I had a lot of fatigue. I would take two benedryl and two extra strength tylenol at bedtime and give my injection and off to sleep I would go. I usually took a 3 to 4 hour nap in the daytime. I didnt have brain fog too bad, but did find it hard to watch tv or read a book (And I love to read). I have a tendency to have depression and have been off and on antidepressants all my adult life, so I did go on one during the year and for a bit afterwards. I also was prescribed Ritalin to help with the fatigue and give me energy to do things. I did not have any bad side effects from either of these drugs. After I completed the year of Interferon I went off the Ritalin and antidepressant. I went back to work. I did have a re-occurrence a few months after this. You would have to review my profile to see exactly when that was, if interested, as I dont remember anymore.

        Good luck with your treatments. Its doable and many people have worked right through it, others like me, took the year off. If you are stage 3a cancer of more, you are quite possibly eligible for SSDI (if you have enough of a work history), as it is considered "internal cancer" by SSDI disability. I had no trouble getting SSDI at all, and when I go to work and make more than $1000 a month I call and it stops and when I make less I call and it kicks right back in. I also started receiving medicare 2 years after my eligibility for SSDI began.

        Vermont_Donna

        stage 3a

        Loading spinner
      Lauri England
      Participant

      I am currently in my 7th month of Interferon treatments 3 times a week. Monday, Wednesday, Friday nights around 8 PM.  I have stage 3 melanoma on the right front of my shoulder and 3 out of 28 lymph nodes tested positive under my right arm.  My experience with Interferon treatments is no energy, extreme fatigue, head aches, muscle soreness pretty much all the time, loss of appetite and weight loss, chills often and depression.  I have mood swings and experience confusion a lot.  Sometimes I also feel paranoid and have trouble driving a car.  I also have had a problem breathing since my treatments began in October.  I have been unable to work since Interferon treatments started and recently was released from my job of 11 years.  I am trying to hang in there for the rest of the 5 months.  By what I read though my side effects could be a lot worse.  I am managing to hang in there.  I do have a lot of support from my family.  I also take an anti depressant that helps.  I take 2 Tylenol right before my injection and again 6 hours later in the middle of the night because of muscle pain.  If I get a head ache and the Tylenol doesn't help I take a Norco and put a heat pad on my upper shoulders and neck.  That really helps me.  I also take Prilosec for my stomach, which really helps.  I haven't really found anything to help with the confusion and paranoia. 

      I check myself all the time for lumps and new moles.  I recently had 3 moles removes from my stomach and they were all clear of cancer.   I have not had another MRI or CT Scan since I started the treatments in October.  I see the doctor every 3 months now,  and my blood is tested every 6 weeks. 

      It is discouraging a lot of the time but do able so far.  It seems like a long road but time goes by pretty fast.  Good luck to you and may God be with you!

      Lauri E

      Loading spinner
      Lauri England
      Participant

      I am currently in my 7th month of Interferon treatments 3 times a week. Monday, Wednesday, Friday nights around 8 PM.  I have stage 3 melanoma on the right front of my shoulder and 3 out of 28 lymph nodes tested positive under my right arm.  My experience with Interferon treatments is no energy, extreme fatigue, head aches, muscle soreness pretty much all the time, loss of appetite and weight loss, chills often and depression.  I have mood swings and experience confusion a lot.  Sometimes I also feel paranoid and have trouble driving a car.  I also have had a problem breathing since my treatments began in October.  I have been unable to work since Interferon treatments started and recently was released from my job of 11 years.  I am trying to hang in there for the rest of the 5 months.  By what I read though my side effects could be a lot worse.  I am managing to hang in there.  I do have a lot of support from my family.  I also take an anti depressant that helps.  I take 2 Tylenol right before my injection and again 6 hours later in the middle of the night because of muscle pain.  If I get a head ache and the Tylenol doesn't help I take a Norco and put a heat pad on my upper shoulders and neck.  That really helps me.  I also take Prilosec for my stomach, which really helps.  I haven't really found anything to help with the confusion and paranoia. 

      I check myself all the time for lumps and new moles.  I recently had 3 moles removes from my stomach and they were all clear of cancer.   I have not had another MRI or CT Scan since I started the treatments in October.  I see the doctor every 3 months now,  and my blood is tested every 6 weeks. 

      It is discouraging a lot of the time but do able so far.  It seems like a long road but time goes by pretty fast.  Good luck to you and may God be with you!

      Lauri E

      Loading spinner
Viewing 17 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.