TO take interferon or not I need help decideing

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1/12/2012 1:48pm
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Replies: 9

Hi on November 23rd I had a tumor removed from my upper arm and a sentenal lymph node. THe cancer had just barely spread to the node, 1 only and none other detected. THe post op showed all the tumor removed and clear margins. On December 21 they removed the 23 surrounding lymph nodes, and they were all clear. I also had a petscan that was normal. I am graded at a stage IIIb because it touched my lymph node. Had my first visit with the cancer dr two days ago. He has ordered some up dated tests but for now I have two choices,, just go through Observation,,or go onto interferion. The Dr. will just give the facts and with interferon, facts are scatered everywhere. I did a lot of reading on it and there are as many pros as cons, and the side effects are pretty bad it seems.

I'm 63 and in good health, but live alone exept for my dog. I work and don't want to retire yet but the idea of having the flu for a year and then after the treatments being back to square one is perplexing. For now I am leaning to not take the treatment, but my kids, in their young 30's aren't happy about it. I know I have to make my own ecision however any reliable facts out there on interferion? It seems as elusive as is melonoma.

Anonymous - (1/12/2012 - 1:55pm)

Hi--

I've been diagnosed the same as you--Stage IIIB. My surgery was in October. Same diagnosis as you. I chose not to do the ipi trial or interferon. I am doing observation and will have scans every few months, see my surgical oncologist every 3 months as well as my local oncologist. I have changed my lifestyle to include basically no sugar, exercise daily, etc. and hoping for the best.

I am very comfortable with my decision and haven't had any regrets at this point.

Thank you we are both on the same path and thinking alike  JW

My husband was faced with this same decision several months ago, though he was Stage 3C (but barely).  After consulting with many doctors, he elected to enroll in the Ipi. vs. Interferon clinical trail.  We decided that even if he was randomized to interferon, there were some people that tolerated the drug well, and it was worth a shot...he could always drop out.  As it turns out, he was randomized to the Interferon group, and reacted pretty poorly to Interferon.  After 6weeks of treatment (a fair shot, we thought), he stopped treatment.  He is still enrolled in the trial and is monitored every 3mos.  Our feeling was that even if Interferon only extended disease free survival, that was buying us time for a better drug to be discovered.  In the end, Interferon completely altered his life so that he was unable to work or be the person he wanted to be... At that point, we decided it was time to quit!  I would encourage you to ask your doctor about the trial and see if it is open anywhere in your area. If you are randomized to Interferon, you can always drop out...

Best Wishes.

Donna

Thank you Donna, and my best wishes, since I am IIIa I was told I do not qualify for any trials, and in doing research, I find I am more fearful of interferon than the actuall illnes at this time. I have a great job and good life, I have to make up my mind by 1-23 however at this time I plan on not taking it,,thanks again  Jim

Hiya...

I was 45 when initially diagnosed.. pretty good health, although a little overweight, taking no other medications.

I did the 1 month intensive interferon, then tried to do the 1 year, but just couldn't make it. I don't have any regrets either way.. but I did read everything I could, talked to both my surgical oncologist and the one managing the interferon, and we were all good with me suspending the interferon.

Part of my problem is that I couldn't work at my Air Traffic Control supervisor job while taking interferon.. they pulled my medical clearance, and probably rightly so... it did affect me.  But I'm glad I at least did the one month part that most sources seem to see as a reasonable compromise between doing all you can and doing nothing.

I'm no expert, by any means, but one thing I have noticed in doing my research is that there are so many different responses to different treatments.. different initial diagnoses, etc.  You gotta do the best you can, and go forward.  Second guessing doesn't do any good.. and it can't even really help the next guy, unless they're in your exact shoes.  Surround yourself with good folks and good information, and then make the best decision you can.. and don't really let any one story or opinion make your decision for you. 

As for side effects, they were pretty bad.. at first, you go.. the flul?  Big deal.  Well, it is if it's every day EVERY DAY for a year.  So, yes, take them seriously.  That being said, if you follow directions that the nurses and docs give you, and take the other meds with the interferon, it can be handled to a point.   In fact, after the 1st month, I was pretty gung-ho and thought it would be easy.  The metal-salty taste to food just lasted a couple days with me, and I thought I had it licked.. but over time, it just wore me down, and the more I read, the more I was convinced that I had accomplished the biggest preventative measures by doing the 1st month.

As for reliable facts?  I don't know of any pure facts.. I looked for them too, but couldn't find them, per se. 

Hiya...

I was 45 when initially diagnosed.. pretty good health, although a little overweight, taking no other medications.

I did the 1 month intensive interferon, then tried to do the 1 year, but just couldn't make it. I don't have any regrets either way.. but I did read everything I could, talked to both my surgical oncologist and the one managing the interferon, and we were all good with me suspending the interferon.

Part of my problem is that I couldn't work at my Air Traffic Control supervisor job while taking interferon.. they pulled my medical clearance, and probably rightly so... it did affect me.  But I'm glad I at least did the one month part that most sources seem to see as a reasonable compromise between doing all you can and doing nothing.

I'm no expert, by any means, but one thing I have noticed in doing my research is that there are so many different responses to different treatments.. different initial diagnoses, etc.  You gotta do the best you can, and go forward.  Second guessing doesn't do any good.. and it can't even really help the next guy, unless they're in your exact shoes.  Surround yourself with good folks and good information, and then make the best decision you can.. and don't really let any one story or opinion make your decision for you. 

As for side effects, they were pretty bad.. at first, you go.. the flul?  Big deal.  Well, it is if it's every day EVERY DAY for a year.  So, yes, take them seriously.  That being said, if you follow directions that the nurses and docs give you, and take the other meds with the interferon, it can be handled to a point.   In fact, after the 1st month, I was pretty gung-ho and thought it would be easy.  The metal-salty taste to food just lasted a couple days with me, and I thought I had it licked.. but over time, it just wore me down, and the more I read, the more I was convinced that I had accomplished the biggest preventative measures by doing the 1st month.

As for reliable facts?  I don't know of any pure facts.. I looked for them too, but couldn't find them, per se. 

As you have read posts there are varying opinions.  Its definaitely a personal decision.  I'm stage IIc and was 42 while taking Interferon.  We decided along with my oncologist that it was worth a try.  I completed a year of Interferon Nov 2011.  I did work the entire year but it was definitely not easy.  I had a desk job which may it a lot easier to goto work, If I had to be on my feet I may not have completed treatment.  My wife did take over a lot things that I did so I could work and take care of myself.  To be honest there were times when I thought I would end the treatment.  Take a look at my profile to see some details of my year of interferon.  Fatigue started early with me and stayed the entire year. I slept alot. I did not do much besides going to work and Dr. appts.  No sides effects since my treatment ended. You can always stop treatment it it gets too bad. Take care.

 

scot

I was in a similar predicament just over 2 years ago.  I was stage 3c then (initial diagnosis).  At that time Interferon or observation were about the only ways to go.  After surgery and radiation I elected to go with the interferon.  The high dose, surprisingly, was very tolerable. except for the 1st 2 nights where I had a 103 fever and severe chills.  After that  I drove myself 30 miles each way to the hospital and back every day.  Major factor was fatigue.  I slept about 10-11 hours at night then napped once or twice during the day.  I work from home and was able to remain on the pay roll full time.  I have to admit, though, it would have been very difficult , if not impossible, to report to an office every day.   I was unable to complete the full year due to neurological symptoms but did remain NED for a total of 20 months.  I don't know if the interferon helped but have no regrets about having it.  Like many other things with mel.....there are no clear answers. I'm presently stage4 and on on IPI with no side effects at all after the 1st dose.  If you feel the need to do something, as I did, maybe look into the Interferon/IPI trial

all the best wishes to you

frankd brooklyn

Hello Jim,

Here is a link to a video that states that there are biomarkers that can determine if interferon will work for you.

See:  http://www.youtube.com/watch?v=6EE5i8sSmyw&feature=relmfu  (Mentioned around the 27 minute counter).

The video also mentions combo drugs around the 50 minute counter which I feel would work better than interferon alone! I am not a big fan of interferon, very toxic with few results. BTW, My two children (both in their thirties) were not too happy that I declined to take it (interferon) in my earlier encounter with melanoma.

Some thoughts:  I spent many, many hours trying to determine what caused my melanoma? In my opinion, it was a lack of sunshine. I worked over 40 years during the afternoon and night turn...thus sleeping during the day! I am currently on a ippi with gm-csf trail and I increased my vitamin D3 levels and the melanoma is in regression!  ;-)

I wish that all that read this post would have their vitamin D3 levels checked, however most won't because their doctors don't know about the benefits of vitamin D3.  :-(

Your Question RE: however any reliable facts out there on interferon? It seems as elusive as is melanoma.

Send me an email at sparkcheckersATyahoo.com for a few other thoughts on interferon. put Melanoma in the subject.

Best Wishes,

Gene (Stage IV)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.