Interferon – Glad you did it?

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

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

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

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

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

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

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

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

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

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

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 list

Mary

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 list

Mary

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

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

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

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

 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!!!

 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!!!

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

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

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

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

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

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

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.

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.

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

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