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Interferon – Glad you did it?

Forums General Melanoma Community Interferon – Glad you did it?

  • Post
    joy_
    Participant

    Subject line says it all.  I am sure there have been many discussions on interferon here, but I'm interested in hearing everyones personal take on it.  Bill is going to start the 4 week high dose treatment this month.  We're not happy about it, but he feels like if he doesn't try it and mel shows up again he'll regret it.

    Tracy

    wife to Bill, stage IIIc

    Subject line says it all.  I am sure there have been many discussions on interferon here, but I'm interested in hearing everyones personal take on it.  Bill is going to start the 4 week high dose treatment this month.  We're not happy about it, but he feels like if he doesn't try it and mel shows up again he'll regret it.

    Tracy

    wife to Bill, stage IIIc

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  • Replies
      dian in spokane
      Participant

      yes, I'm glad I did it.

      Even though my melanoma returned, it took five years, and I just didn't feel strong enough at the time to take the 'watch and wait' approach, which was my only other option.

      Looking back, I wish I had quit it sooner than I did (I stopped during my 10th month) but at the time, I really wanted to keep going as long as I possibly could.

      Good luck. I hope that boot camp goes easy for your husband

      dian

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        StanN
        Participant

        I agree with Dian,I  stopped at 9 months but,now  looking back it should of been at the 6th month point,when i hit the wall..,,,,,hard th efirst time.

        My Dr seemed to down play the side  effects.,and I seemed to experience them all..

        At 8 months I noticed I couldn't hear out of my left ear,i thought it was ear infection or sinus issue..

        At 9 month went to a hearing la and b discovered almost complete hearing loss in that ear,due to interferon caused nerve damage.So i stopped at the 9 month point.

         I also have neuropathy in my extremities,tingling in hands and numbness in feet..The GOOD new is is that I have been

        N.E.D. since 2002

          I worked  as an urban/ firefighter at the time. which was extremely hard to do.

        Good luck keep us updated on how things are going you can check my profile under StanN

         StanN

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        StanN
        Participant

        I agree with Dian,I  stopped at 9 months but,now  looking back it should of been at the 6th month point,when i hit the wall..,,,,,hard th efirst time.

        My Dr seemed to down play the side  effects.,and I seemed to experience them all..

        At 8 months I noticed I couldn't hear out of my left ear,i thought it was ear infection or sinus issue..

        At 9 month went to a hearing la and b discovered almost complete hearing loss in that ear,due to interferon caused nerve damage.So i stopped at the 9 month point.

         I also have neuropathy in my extremities,tingling in hands and numbness in feet..The GOOD new is is that I have been

        N.E.D. since 2002

          I worked  as an urban/ firefighter at the time. which was extremely hard to do.

        Good luck keep us updated on how things are going you can check my profile under StanN

         StanN

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      dian in spokane
      Participant

      yes, I'm glad I did it.

      Even though my melanoma returned, it took five years, and I just didn't feel strong enough at the time to take the 'watch and wait' approach, which was my only other option.

      Looking back, I wish I had quit it sooner than I did (I stopped during my 10th month) but at the time, I really wanted to keep going as long as I possibly could.

      Good luck. I hope that boot camp goes easy for your husband

      dian

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      Kevin from Atlanta
      Participant

      I hate that drug but glad I did it. Inf postponed recurrance for 11 months.

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      Kevin from Atlanta
      Participant

      I hate that drug but glad I did it. Inf postponed recurrance for 11 months.

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      Kevin from Atlanta
      Participant

      I hate that drug but glad I did it. Inf postponed recurrance for 11 months.

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      Kevin from Atlanta
      Participant

      I hate that drug but glad I did it. Inf postponed recurrance for 11 months.

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      triciad
      Participant

      Hi Tracy,

      I'm just starting my 11th month.  I know several people who did interferon and are 5 years NED.  I'm hoping to have the same luck!

      It's not a picnic; however, it is something that has the possibility of being helpful.  It's doable…just get in the mind set that it works for some and I'll be in that group.

      Have your husband drink PLENTY of water.  I did shots on Tues/Thurs/Sat.  I took the Benadryl and 2 Tylenol before the injection and went to bed shortly after the injection.  It's been okay.  I'm tired, but I'm able to work. 

      Best of luck to you and your husband.  Please let me know if you want any additional information.

      God speed.

      Tricia

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      triciad
      Participant

      Hi Tracy,

      I'm just starting my 11th month.  I know several people who did interferon and are 5 years NED.  I'm hoping to have the same luck!

      It's not a picnic; however, it is something that has the possibility of being helpful.  It's doable…just get in the mind set that it works for some and I'll be in that group.

      Have your husband drink PLENTY of water.  I did shots on Tues/Thurs/Sat.  I took the Benadryl and 2 Tylenol before the injection and went to bed shortly after the injection.  It's been okay.  I'm tired, but I'm able to work. 

      Best of luck to you and your husband.  Please let me know if you want any additional information.

      God speed.

      Tricia

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      ValinMtl
      Participant

      Hi Tracy

      I took interferon high dosage month of January 2009 when I was IIIb. Continued with low dosage until recurrence in June 2009…part of my problem could be that they converted from kilos to lbs. incorrectly and my high dosage ended up being 1/3 short of what it should have been..some mistake eh?  It was discovered during week four of high dosage.

      Yes, if I had to do over I would definitely do the high dosage, not too sure about the other part.  Didn't work for me but hey a young fellow down the road about 15 years ago did the entire year of interferon..has never had a recurrence!!

      Val stage IV

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        Kevin from Atlanta
        Participant

        Tracy,

        Please remember that this board is skewed towards those that had a recurrance. If the sugery and Inf worked, they wouldn't be here.

        Addess the issue of depression which can be a side effect of Interferon. I started Prozac before the treatments began and glad I did.

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        Kevin from Atlanta
        Participant

        Tracy,

        Please remember that this board is skewed towards those that had a recurrance. If the sugery and Inf worked, they wouldn't be here.

        Addess the issue of depression which can be a side effect of Interferon. I started Prozac before the treatments began and glad I did.

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      ValinMtl
      Participant

      Hi Tracy

      I took interferon high dosage month of January 2009 when I was IIIb. Continued with low dosage until recurrence in June 2009…part of my problem could be that they converted from kilos to lbs. incorrectly and my high dosage ended up being 1/3 short of what it should have been..some mistake eh?  It was discovered during week four of high dosage.

      Yes, if I had to do over I would definitely do the high dosage, not too sure about the other part.  Didn't work for me but hey a young fellow down the road about 15 years ago did the entire year of interferon..has never had a recurrence!!

      Val stage IV

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      MaryBZ
      Participant

      Hi Tracey,

       

      I would definitely do the high dose but wish I would have heeded the advice of my first oncologist who advised me not to do the 11 months low dose due to me pre-existing depression.  I sought out a doctor who told me to try it and I could always stop.  I had to stop after just 3 weeks due to suicidal thoughts and literally 3 weeks of insomnia!!!  Ambien CR, Ativan, and other medications were tried to get me to sleep but my eyes really "bulged" out of my head and I could not shut my brain off.  I don't know how I got through 3 weeks of teaching elementary school children but I did.  It has taken well over a year for me to feel "normal" again.  My first oncologist tried to warn me but I wanted to try to fight this darn beast.  Good luck!  I'll put you on my prayer listheart

      Mary

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      MaryBZ
      Participant

      Hi Tracey,

       

      I would definitely do the high dose but wish I would have heeded the advice of my first oncologist who advised me not to do the 11 months low dose due to me pre-existing depression.  I sought out a doctor who told me to try it and I could always stop.  I had to stop after just 3 weeks due to suicidal thoughts and literally 3 weeks of insomnia!!!  Ambien CR, Ativan, and other medications were tried to get me to sleep but my eyes really "bulged" out of my head and I could not shut my brain off.  I don't know how I got through 3 weeks of teaching elementary school children but I did.  It has taken well over a year for me to feel "normal" again.  My first oncologist tried to warn me but I wanted to try to fight this darn beast.  Good luck!  I'll put you on my prayer listheart

      Mary

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      brethlady
      Participant

      Hi Tracy,

      I did inf for 5 months then had to stop because of suicidal tendencies and just really feeling like crap.  I was disappointed in myself that I couldn't make it all the way thru and still feel bad about it.  Mel came back within a year.  I was predisposed to depression prior to Inf … they warned me it might be difficult for me and it was.  Hope Bill does well with it and I hope you do too.  It was difficult for my family to see me so uncomfortable but they were wonderful and made a huge difference for me.  Best of luck to both of you.  My prayers are with you

       

      brethlady stage 3a

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      brethlady
      Participant

      Hi Tracy,

      I did inf for 5 months then had to stop because of suicidal tendencies and just really feeling like crap.  I was disappointed in myself that I couldn't make it all the way thru and still feel bad about it.  Mel came back within a year.  I was predisposed to depression prior to Inf … they warned me it might be difficult for me and it was.  Hope Bill does well with it and I hope you do too.  It was difficult for my family to see me so uncomfortable but they were wonderful and made a huge difference for me.  Best of luck to both of you.  My prayers are with you

       

      brethlady stage 3a

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      joy_
      Participant

      Thanks everyone!  I appreciate the feedback and especially the prayers.

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      joy_
      Participant

      Thanks everyone!  I appreciate the feedback and especially the prayers.

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      DebbieW
      Participant

      I did my year of Interferon from Nov 2001 – Nov 2002 and I am now 9 years NED!

      Yes, I am glad that I did it!

      I had a large ulcerated nodular melanoma and I have read lately that it does seem to work better for ulcerated tumors. There is also a large study that the patients that had the greatest auto immune responses while taking the Interferon lived the longest.  Seeing as I now have hypothyroidism, Raynaud's Disease, Rheumatoid arthritis, and oral lichen planus I think I hit the mother load in auto immunne responses!

      Best wishes to you,

      DebbieW

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      DebbieW
      Participant

      I did my year of Interferon from Nov 2001 – Nov 2002 and I am now 9 years NED!

      Yes, I am glad that I did it!

      I had a large ulcerated nodular melanoma and I have read lately that it does seem to work better for ulcerated tumors. There is also a large study that the patients that had the greatest auto immune responses while taking the Interferon lived the longest.  Seeing as I now have hypothyroidism, Raynaud's Disease, Rheumatoid arthritis, and oral lichen planus I think I hit the mother load in auto immunne responses!

      Best wishes to you,

      DebbieW

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      MsKage
      Participant

       To Interferon or Not To Interferon – it is a huge and very personal decision.  I chose to do interferon thinking that if it works, it's worth it… right? I only recently went through this and have a lot to say, so I apologize if this response gets a little wordy…

      The high dose month went as well as it can. I worked full time.  The low dose was OK at first, but by the end of the second month it felt very toxic and I dreaded every injection.  I had pretty bad side-effects, some of which are still not going away. It got to the point where I felt like life with interferon wasn't worth living (depression or reality??). When they found lesions on my brain, presumably caused by the interferon, it was the last straw.

      Apparently, the most important component of treatment is the high dose month, so I feel good about what I was able to complete.   Anyone doing interferon treatments needs to keep a VERY close eye on their general health and be wary of its toxicity. Don't let your doctor poo-poo your symptoms just because interferon has a lot of side effects. It was a tough decision to quit.  It felt like I was giving up on the fight. I do not believe, though, that possibly prolonging a reccurence is worth developing additional chronic problems from the treatment.

      Would I do it again? Absolutely.   Melanoma is such a head game, and I think the psychology of doing interferon is almost as important as it's actual effect.  I was in "fight-mode". Who knows what the truth is, but something like a placebo-effect at least made me think I was fighting.  Even if it comes back in a year, I can tell myself that without the interferon it may have come back sooner or it may have been more aggressive. It helps me stay positive.

       Interferon is dangerous, and melanoma is deadly.  Stage 3 people do not have many other weapons, unfortunately.  I'd be happy to answer any other questions. Good luck…  It can be done, and some days will be better than others.  Just keep moving foward and ask for help when you need it!!  Most importantly, be good to yourself and never give up the fight.

      Oh, and Ibuprofen was a blessing through this; it worked better than anything else for headaches (for me anyway). Proper rest and hydration make a huge difference too.

      -Stage 3, NED 6 months and counting!!!

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        Lisa13
        Participant

        I'm Stage 3c and have decided against the Interferon and instead do a clinical trial for adjuvent therapy using ipi. It's been a hard decision for me, but a 17% delay in reoccurence wasn't a strong enough number to put myself through hell for a year – especially considering I statistcally have 40% chance of 5 years. Interferon has worked for many people and everyone either gets through it or doesn't and others have horrible side effects that they're still dealing with after treatment. I also have read lots of stories of people who didn't do Interferon and are still NED after 6,7,8 years, The watch and wait versus Interferon doesn't seem to be that big of a difference in terms of delay of reoccurence, so I'd rather try a clinical trial at this stage.  My oncologist isn't a fan of Interferon – is there anybody here whose Dr. feels the same way? 

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        washoegal
        Participant

        My Onc isn't a big fan of interferon either.  I'm a stage 3a Watch and Wait.  If clinical trials had been available for my stage I would have gone there too.

         

        Mary

        Stage 3

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        Carol Taylor
        Participant

        When I gave my "no Interferon" decision in August 2008, a PA that was making rounds with the oncologist (a melanoma specialist) literally burst into applause. The onc smiled, my onc surgeon & his staff were relieved. No one I deal with seems to be a fan.

        And, I honestly don't look at it as "watch and wait." That term never even occurred to me or was ever said to me until I got on this board.  I look at "no Intereferon", for me, as being very proactive. After researching the side effects, and knowing me well enough to know that any side effects of anything that exist…I'm going to experience them AND come up with a few new ones…not kidding…I decided if melanoma DOES come back, then I'll be in a better position to deal and fight if I'm strong and all my organs are in good working order.  I'm stage 3b and haven't had any problems in going on 3 years now. I'm strong physically, emotionally, and spiritually, and in a good place if there's anything in the future to deal with and that possibility exists. I know the stat I've got hanging over my head and have seen it played out in the life of a colleague.

        It is a personal choice and we all have to make the call we feel comfortable with and once that call's made, there's no going back.  You do what you gotta do.  No matter what our own oncs advise, we're the ones who have to live with it.  Mine didn't really advise.  She told me it was an option, the only one given, left it at that and I researched it. She didn't want to sway me one way or the other and I appreciated that.

        Grace and peace,

        Carol

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        Carol Taylor
        Participant

        When I gave my "no Interferon" decision in August 2008, a PA that was making rounds with the oncologist (a melanoma specialist) literally burst into applause. The onc smiled, my onc surgeon & his staff were relieved. No one I deal with seems to be a fan.

        And, I honestly don't look at it as "watch and wait." That term never even occurred to me or was ever said to me until I got on this board.  I look at "no Intereferon", for me, as being very proactive. After researching the side effects, and knowing me well enough to know that any side effects of anything that exist…I'm going to experience them AND come up with a few new ones…not kidding…I decided if melanoma DOES come back, then I'll be in a better position to deal and fight if I'm strong and all my organs are in good working order.  I'm stage 3b and haven't had any problems in going on 3 years now. I'm strong physically, emotionally, and spiritually, and in a good place if there's anything in the future to deal with and that possibility exists. I know the stat I've got hanging over my head and have seen it played out in the life of a colleague.

        It is a personal choice and we all have to make the call we feel comfortable with and once that call's made, there's no going back.  You do what you gotta do.  No matter what our own oncs advise, we're the ones who have to live with it.  Mine didn't really advise.  She told me it was an option, the only one given, left it at that and I researched it. She didn't want to sway me one way or the other and I appreciated that.

        Grace and peace,

        Carol

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        washoegal
        Participant

        My Onc isn't a big fan of interferon either.  I'm a stage 3a Watch and Wait.  If clinical trials had been available for my stage I would have gone there too.

         

        Mary

        Stage 3

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        Lisa13
        Participant

        I'm Stage 3c and have decided against the Interferon and instead do a clinical trial for adjuvent therapy using ipi. It's been a hard decision for me, but a 17% delay in reoccurence wasn't a strong enough number to put myself through hell for a year – especially considering I statistcally have 40% chance of 5 years. Interferon has worked for many people and everyone either gets through it or doesn't and others have horrible side effects that they're still dealing with after treatment. I also have read lots of stories of people who didn't do Interferon and are still NED after 6,7,8 years, The watch and wait versus Interferon doesn't seem to be that big of a difference in terms of delay of reoccurence, so I'd rather try a clinical trial at this stage.  My oncologist isn't a fan of Interferon – is there anybody here whose Dr. feels the same way? 

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      MsKage
      Participant

       To Interferon or Not To Interferon – it is a huge and very personal decision.  I chose to do interferon thinking that if it works, it's worth it… right? I only recently went through this and have a lot to say, so I apologize if this response gets a little wordy…

      The high dose month went as well as it can. I worked full time.  The low dose was OK at first, but by the end of the second month it felt very toxic and I dreaded every injection.  I had pretty bad side-effects, some of which are still not going away. It got to the point where I felt like life with interferon wasn't worth living (depression or reality??). When they found lesions on my brain, presumably caused by the interferon, it was the last straw.

      Apparently, the most important component of treatment is the high dose month, so I feel good about what I was able to complete.   Anyone doing interferon treatments needs to keep a VERY close eye on their general health and be wary of its toxicity. Don't let your doctor poo-poo your symptoms just because interferon has a lot of side effects. It was a tough decision to quit.  It felt like I was giving up on the fight. I do not believe, though, that possibly prolonging a reccurence is worth developing additional chronic problems from the treatment.

      Would I do it again? Absolutely.   Melanoma is such a head game, and I think the psychology of doing interferon is almost as important as it's actual effect.  I was in "fight-mode". Who knows what the truth is, but something like a placebo-effect at least made me think I was fighting.  Even if it comes back in a year, I can tell myself that without the interferon it may have come back sooner or it may have been more aggressive. It helps me stay positive.

       Interferon is dangerous, and melanoma is deadly.  Stage 3 people do not have many other weapons, unfortunately.  I'd be happy to answer any other questions. Good luck…  It can be done, and some days will be better than others.  Just keep moving foward and ask for help when you need it!!  Most importantly, be good to yourself and never give up the fight.

      Oh, and Ibuprofen was a blessing through this; it worked better than anything else for headaches (for me anyway). Proper rest and hydration make a huge difference too.

      -Stage 3, NED 6 months and counting!!!

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      DebbieH
      Participant

      I am very glad that I decided to do interferon.  I was stage IIIC in 2001.  I started interferon nearly the same day as StanN who posted above and we decided to quit on nearly the same day as well (9 months later).  I also had DebbieW, who also just posted, as an interferon buddy and I am VERY thankful that we had this place where we could support each other.  It can be a rough treatment but I didn't want to be sorry for not doing more and I went into it thinking I would quit when it got to be too much.  I just cringe when I see these doctors saying it's not worth the side effects for the number of people it helps – if you are IN that small number it's huge and nobody knows who it will benefit and who it won't.  Anyway, count me among those who are glad – 9 1/2 years out from stage IIIC and counting. 

      Best of luck to you and your husband. Keep us posted.

      DebbieH

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        dawn dion
        Participant

        I know that everyone on this board says once you make your decision don't look back – but I am having a hard time with that – I wish that I had done the interferon.  I was also told by my onc that it was worthless and I wouldn't get any scans or be watched anymore than I would have if I did watch and wait.  At stage IIIC I chose to do ipi – It did not work for me.  I'm not saying it won't work for anyone else.  I know that everyone is different and what works for one may not work for the other but I agree with Debbie about Drs telling you that one thing is useless compared to something else.   Had I not been told that about interferon I would have done it – since I was fully prepared for that route until we had that conversation.

        All the best to you

        Hugs and Smiles

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        Laurie from maine
        Participant

        Hi,

        I am glad I did it.  I also felt I needed to do something and did interferon as long as I could tolerate it.  I only made it 5 months before my liver couldnt tolerate it anymore.  Both melanoma specialists I saw were for high dose and seemed on the fence about the low dose.  They seemed to be of the opinion do low dose but if your quality of life was greatly effected they suggested that was time to stop.  Low dose beat me up pretty good lost 20 pounds, trouble breathing and fatigue.    I am 2 years NED – who knows if that is why but it did help me at the time to feel I was in control somewhat.

        good luck!

        laurie from maine

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        Laurie from maine
        Participant

        Hi,

        I am glad I did it.  I also felt I needed to do something and did interferon as long as I could tolerate it.  I only made it 5 months before my liver couldnt tolerate it anymore.  Both melanoma specialists I saw were for high dose and seemed on the fence about the low dose.  They seemed to be of the opinion do low dose but if your quality of life was greatly effected they suggested that was time to stop.  Low dose beat me up pretty good lost 20 pounds, trouble breathing and fatigue.    I am 2 years NED – who knows if that is why but it did help me at the time to feel I was in control somewhat.

        good luck!

        laurie from maine

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        dawn dion
        Participant

        I know that everyone on this board says once you make your decision don't look back – but I am having a hard time with that – I wish that I had done the interferon.  I was also told by my onc that it was worthless and I wouldn't get any scans or be watched anymore than I would have if I did watch and wait.  At stage IIIC I chose to do ipi – It did not work for me.  I'm not saying it won't work for anyone else.  I know that everyone is different and what works for one may not work for the other but I agree with Debbie about Drs telling you that one thing is useless compared to something else.   Had I not been told that about interferon I would have done it – since I was fully prepared for that route until we had that conversation.

        All the best to you

        Hugs and Smiles

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      DebbieH
      Participant

      I am very glad that I decided to do interferon.  I was stage IIIC in 2001.  I started interferon nearly the same day as StanN who posted above and we decided to quit on nearly the same day as well (9 months later).  I also had DebbieW, who also just posted, as an interferon buddy and I am VERY thankful that we had this place where we could support each other.  It can be a rough treatment but I didn't want to be sorry for not doing more and I went into it thinking I would quit when it got to be too much.  I just cringe when I see these doctors saying it's not worth the side effects for the number of people it helps – if you are IN that small number it's huge and nobody knows who it will benefit and who it won't.  Anyway, count me among those who are glad – 9 1/2 years out from stage IIIC and counting. 

      Best of luck to you and your husband. Keep us posted.

      DebbieH

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      gabsound
      Participant
      Thanks for asking this question! And thanks again to all who have shared their experiences.

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      gabsound
      Participant
      Thanks for asking this question! And thanks again to all who have shared their experiences.

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      FertilityDoc
      Participant

      As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

      Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

      Kevin L

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      FertilityDoc
      Participant

      As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

      Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

      Kevin L

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      FertilityDoc
      Participant

      As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

      Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

      Kevin L

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      FertilityDoc
      Participant

      As others have pointed out, it is a very personal decision.  For many Stage III patients with completely resected melanomas, the options are few.  It is mostly Interferon or Ipi. I am a stage IIIB melanoma patient.   I read most of the research on this before making a decision and consulted with 3 different oncologists.  Ultimately, I decided to go with the interferon.  I was diagnosed in 04/2009.  Finished the last interferon in 06/2010.   For some reason I found the high dose IV month to be easy.  The 11 subcutaneous months were more difficult.  I had many side effects but tiredness and muscle fatigue were the prominent ones.  I completed the full year.   I was thankful that I have a desk job.  I slowed down a little at work but was able to get through it.  If I had a physically demanding job, it would have been vastly more difficult.

      Thus far my scans have been completely negative.  I was back to normal 1 month after finishing the interferon.  You forget how bad you feel on the interferon until you stop it and you are normal again  As the expression goes, It's a long way to Tipperary.  I am sincerely thankful to be disease and symptom free at this point.  Was it the interon or my underlying tumor biology?  I'll never know.  I'll never look back at the decision.  I had to make the decision in an aggressive and proactive way.   No regrets allowed.

      Kevin L

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      Lauri England
      Participant

      I am currently in my 7th month of Interferon treatments. I am stage III with 3 lymph nodes positive. The 1st month of high dose Interferon went ok for me.  I would get really bad headaches, and I developed a breathing problem.  Lungs always feel congested and still do.  Other then that it was not so bad.  Then I started the 3 shots a week. Monday, Wednesday, and Friday for the next 11 months.  My entire body aches a lot which makes it hard to stay active.  This is increasingly getting worse as time goes on.  I have experienced depression as well.  I do take Prozac and it does help.  It takes some time to work though.  I have been unable to work since I started Interferon in October and was recently let go from my job after 11 years.  I am able to get disability though.  That was a blessing.  I experience paranoia and sometimes can't drive a car.  I am very forgetful and it is very hard to make decisions, and confusion.  I have a lot of support from my family which is the only reason I am able to continue.  Although sometimes I feel like I am very alone.  A counselor I recently went to gave me this Web Site address and I have been on it every since just reading other peoples experiences and trying to be positive.  I also read the bible and pray.  That really helps me.  I really am struggling with not being hungry at all.  I have no apatite and I have lost 10 pounds since I started the treatments.  I was 98 pounds when I got this horrible beast and now I am 89 to 91 pounds.  I try to force myself to eat small things.  Apples, Bananas, salad.  I try to avoid spicy food because I get sores on the roof of my mouth that hurt.  I also experience extreme dry mouth and some foods taste bad.  This is all do able though so far. I am also loosing a lot of my hair.  Not sure if I will have any left by the time this is over.  I guess I experience quite a lot of symptoms.  I feel like I have the flu daily with chills and aches and pains in my muscles.  I live on Tylenol.  I take a pain killer for my headaches but it puts me to sleep so I don't like taking it.  I don't sleep well at night either.  I get my shots in the evening around 8 or so and I always wake up in the middle of the night aching really bad in my legs and back.  I take Tylenol and it helps a lot and I go back to sleep.  I find that I am extremely fatigued the day after as well.  Absolutely no energy, not really tired but weak.  Please remember that this is my experience and each individual is different.  I will keep plugging away. 4 more months to go.

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        MichaelFL
        Participant

        Hi Lauri,

        Sound like you are "plugging" away at this really hard. How is your blood work?

         I also wanted to make you aware that studies show that the one month high dose to be as benificial as the 11 month low dose, so if you feel you need to stop early, there is no shame in it.

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        MichaelFL
        Participant

        Hi Lauri,

        Sound like you are "plugging" away at this really hard. How is your blood work?

         I also wanted to make you aware that studies show that the one month high dose to be as benificial as the 11 month low dose, so if you feel you need to stop early, there is no shame in it.

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      Lauri England
      Participant

      I am currently in my 7th month of Interferon treatments. I am stage III with 3 lymph nodes positive. The 1st month of high dose Interferon went ok for me.  I would get really bad headaches, and I developed a breathing problem.  Lungs always feel congested and still do.  Other then that it was not so bad.  Then I started the 3 shots a week. Monday, Wednesday, and Friday for the next 11 months.  My entire body aches a lot which makes it hard to stay active.  This is increasingly getting worse as time goes on.  I have experienced depression as well.  I do take Prozac and it does help.  It takes some time to work though.  I have been unable to work since I started Interferon in October and was recently let go from my job after 11 years.  I am able to get disability though.  That was a blessing.  I experience paranoia and sometimes can't drive a car.  I am very forgetful and it is very hard to make decisions, and confusion.  I have a lot of support from my family which is the only reason I am able to continue.  Although sometimes I feel like I am very alone.  A counselor I recently went to gave me this Web Site address and I have been on it every since just reading other peoples experiences and trying to be positive.  I also read the bible and pray.  That really helps me.  I really am struggling with not being hungry at all.  I have no apatite and I have lost 10 pounds since I started the treatments.  I was 98 pounds when I got this horrible beast and now I am 89 to 91 pounds.  I try to force myself to eat small things.  Apples, Bananas, salad.  I try to avoid spicy food because I get sores on the roof of my mouth that hurt.  I also experience extreme dry mouth and some foods taste bad.  This is all do able though so far. I am also loosing a lot of my hair.  Not sure if I will have any left by the time this is over.  I guess I experience quite a lot of symptoms.  I feel like I have the flu daily with chills and aches and pains in my muscles.  I live on Tylenol.  I take a pain killer for my headaches but it puts me to sleep so I don't like taking it.  I don't sleep well at night either.  I get my shots in the evening around 8 or so and I always wake up in the middle of the night aching really bad in my legs and back.  I take Tylenol and it helps a lot and I go back to sleep.  I find that I am extremely fatigued the day after as well.  Absolutely no energy, not really tired but weak.  Please remember that this is my experience and each individual is different.  I will keep plugging away. 4 more months to go.

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      boot2aboot
      Participant

      thanks for the interferon feedback…i dread taking this stuff but i don't see any other options but to 'buck up suck up' to the treatments…

      boots

      newly diagnosed (lymph node tumor)

      stage 3

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      boot2aboot
      Participant

      thanks for the interferon feedback…i dread taking this stuff but i don't see any other options but to 'buck up suck up' to the treatments…

      boots

      newly diagnosed (lymph node tumor)

      stage 3

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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.

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