long term side effects of interferon

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5/18/2011 10:03pm
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Replies: 20

Hi- I am new to this forum, but have learned so much from all of the info that has been posted. I am in my fifth month of interferon treatment for stage 3B. I feel like the symptoms are getting progressively worse as I get further along....I have joint pain, headaches, loss of appetite,fatigue, and I'm staring to notice myself being very irritable, which isn't my nature. I guess I thought I would get used to the symptoms and feel "normal"by now, but that's not the case. Some of you have stopped interferon due to side effects....how did you know when it was time to stop? Is it typical for side effects to get worse in the later months of treatment?

I am 7 1/2 months into Interferon treatments.  The side effects do start to get better as far as I usually only experience muscle pain and headaches the day after the shot.  I have to do these 3 times a week.  I have less bad days though.  I do have bad fatigue and some depression.  I also feel sick to my stomach frequently but all so far is do able.  I wish you luck and this web site is such a help knowing your not alone and getting other peoples out looks on different things concerning melanoma.  I guess I feel like the more you know about this monster the better.

Don't sweat the small stuff. There are bigger fish to fry!

Anonymous - (11/8/2013 - 12:03pm)

In 1999 my wife and I were told we had Hep C...In 2000 I went on the 3 shot a week plan and it didn't work. However, I was able to bounce back from that disaster. In 2003 I was in clinical trials with PEG, the time released version. So after being told I had 2-5 years to live in 1999 Im still here and virus free. That's the good news. I believe somethng like 1 in 3 have some long term effects and I am one of them. My best advice is if your liver is still good do not go on any interferon. Start taking supplements like Milk Thistle, Alpha Lipoic Acid, NAC, TMG, Tumeric and a B vitamin complex (nothing with iron). Herbs like Bupleurum and Schizandra are good too. Most important get a juicer and drink a cup or two of fresh juice a day with beets and apples mainly (watch your greens like spinach...again the iron) and carrots, but check with a wellness doctor to make sure you aren't adding any iron. Sorry, but you have to give up drinking too and watch your acetaminophen intake. Now if your liver is torched like mine is you can try the 3 a week plan. If that doesn't work go for PEG. But if after 6 months there is no viral detection and you feel like putting a bullet in your head like I did, walk away and monitor your liver enzymes. I tried to walk away but they reduced my dosage and convinced me to stay (it was a clinical trial after all lol). I believe that's the long and short of it.....good luck to you all

 

 

I quit in my tenth month, but looking back I think I should have quit around the 7th month. I got progressively worse from around month 6, and really had no energy. I couldn't walk around the block, I'd quit driving, and I would cough until I could barely breathe. My scans at 9 months showed so many problems in my lungs that they suspected melanoma had spread to my lungs. When that was ruled out (by bronchoscopy) we discontinuted the interferon for two weeks to see if I had improvement and it was amazing how fast I got better. So I never went back on. The docs decided (more than me) that we had gotten to a point where the interferon was causing more problems than it was helping.

My cough has never gone away, but I went 5 years after interferon before advancing to stage IV, and I have now been NED almost 2 yrs since surgery.

dian

oh.. and, I think it's different for different people. I know some people who will tell you that interferon got easier for them after they were on it for a while. Many will tell you that the first month, the 'boot camp' month was the worse and the self injection part was easier.

But that was not the case for me. The first month was mostly easy enough for me. The last week was hard, but I knew it was almost over, so just skated through it. The low dose phase was much worse for me and got worse, consistently, every month until I quit.

dian

Though new, I wish I did not have to extend a welcome to you,,; but never the less, welcome..

Yes, active use of Interferon leads to high fever, joint pain, alopecia, loss of appetite, anorexia,, nagging headache,, fatigue, depression and can lead to a blown thyroid..

The degree which it does that varies from person to person.andis  it up to the individual to decide their own level of tolerance and whether to say no more.

Sadly, there is no "normal" response to doing Interferon; rather what each person has to discover is their level of tolerance based upon the individual fight response.

In your mind, you will resolve when enough is enough; let us know how you decided.

Charlie S

I experienced similar symptoms.  My goal was to complete to complete my year of interferon, so I managed my side-effects thru medication. I took Zofran twice a day for the nausea.  When the joint pain got became so severe even the pressure of lying in bed to sleep was too painful, I took pain meds at night so I could sleep.  When I complained about becoming excessively fatigued, my oncologist tested me and found I had become extremely vitamin D deficient.  A month of high-dose vitamin D supplements, followed by OTC vitamin D for the rest of my interferon treatment maintained my vitamin D levels and I believe helped keep the fatigue at a "normal" interferon fatigue level. Your oncologist can even prescribe medication to help with the loss of appetite if it becomes too severe. 

What it boils down to is this: How determined are you to complete your year of interferon, and how willing are you to take additional medications to accomplish that goal?  It's a personal decision and only you can make that decision.

"A little ingenuity and a lot of duct tape will solve many problems.",
AKC Agility Judges Guidelines

My husband, TJ is also stage 3B... started Interferon in January.  He has taken Ativan 1mg 2hours before bedtime for insomnia.  He started about 6 weeks into treatment.  We have noticed that if he misses a couple of days of Ativan he becomes very irritable... as soon as he restarts it he feels like himself again.  You might try it in the evening to see if you get some relief.  

Also, there was a study done on patients who took interferon alone vs those who took Interferon and Paxil.  The percentage of patients who completed the year was much higher in the Paxil group.

TJ tried it for a week and felt terrible so he stopped but it does work very well for a lot of patients.  It also increases your appetite.

I hope that helps.  Kelly

hi,

I had to quit after 4 months because my liver couldnt tolerate it.  They gave me the choice to take some time off and then go back on - but my melanoma oncologist was of the mind that I should try interferon but if it becomes a "quality of life" issue and you are losing a year because of ill health from side effects then he didnt think it was worth it to continue.  So..... I stopped.  For me the side effects got worse and worse the more I took it.  I had real bad problems with shortness of breath, stairs and hllls killed me.  Also most food tasted like it had gone bad so I lost 20 pounds.  I did have hair loss too, lost about 2/3 of it. I also got the chills alot.   I was glad I tried it and did my best and truthfully I was almost relieved when my liver decided it had had enough because I was really beat.

Now all side effects are gone and it feels sooooo good to feel good again.  Good luck! and like they said everyone is different.

laurie from maine

Stopping INF is as persona a decision as starting INF. There were many, many times I thought I had had enough, but I was determined to finish the year. 5 years later, it all seems like a dream. I took a bit of Ambian when I couldn't sleep, and a bit of Lexapro to help with the emotional swings. My advise is to talk to your doctor. 

Thank you all for your input and sharing your personal experience. I have an appointment on Tuesday with my oncologist. We'll see what she recommends. I am most concerned with the mood swings, so maybe medication would help. As long as my body can tolerate the treatment, I am in it for the full year. I'll let you know what i find out!

Know that if your oncologist recommends paxil or another anti-depressant it can take 6 weeks to feel the full effect (and could cause some negative side effects until your body gets used to it.)  So discuss an interim medication that could help your mood now.  As mentioned above, Ativan is a good choice.  (I'm a nurse and have a lot of exposure to pts on these medications.  Its well tolerated and I think you'll feel an immediate positive response).

Best of luck.  Kelly

Hi just check my profile page. I had horrible side affects from interferon. Low rbc and high WBC had to get aranesp n neulasta shots for that. Fever, vomiting , diarrhea lost down to 90 lbs, fevers, body aches, alopecia, and quit at 11 months due to adverse reaction. It caused a TIA, hadhimotos thyroiditis and a blood infection where I had to have IV vancomycin. I'm still glad I did it as for me I wanted to do some form of treatment at that time. Best of luck to you:)

Alicia stage 3 w/ 3 primaries (most recent Jan 7, 2011)

My name is Colin. I was on interferon for 32 months, with ribaviron the last 6 months. That was 10 years ago. I'm still completely insane. Any thoughts?

Hi,

I was diagnosed with Melanoma back in 2011. My sister told me the mole on my back looked "suspicious" ( color was purple and black). So i took it off , surgically. Results came in and i was in shock, so were the doctors. Beeing only 24 with no history of Melanoma in family. Dark hair, tan skin collor, dark eyers. Totally attypical.

Pathology results were: Nodular Melanoma, Breslow 5mm , Clark IV, no ulceration. It didn't spread on my lymph nodes.

Long story short. I was put on High dose INTRON A. Induction phase 30 MIU 5 days a week for 4 weeks and maintenance phase 18 MIU 3 days a week for 48 weeks.

The side effects were fever,chills, muscle ache (legs), nausea, fatigue, mild depression, hair thinning, weight loss (16kg or 35 pounds). I hated my life every single day. It was by far the worst time of my life. But i do not regret taking it. Anyone with high risk of reccurance will take almost anything to get better. However, as for the INTRON, only time will tell.

So, i was thinking of doing research on how other people went through this therapy. How they felt, what was their dosage, side effects. Does anyone have some tips on how to reduce some of the symptoms. I know it could be case to case basis but i think if we all share our stories we can help others who are currently going through or about to start the treatment with IFN.

I wish i had some form of help, or understanding or anyone to talk to when i was starting my therapy. I was alone, and the info found online was not that helpful Everything is full of lists of side effects and written for doctors papers on nih.ov.

My plan is to conduct this research on anyone who has been through, or is currently going through a therapy with any kind of Interferon like INTRON A, Roferon A.... and others. I don't know if anyone would be willing to participate in this research, but i think it would be a great way to share your story with the rest of the world together with other people.

I am new this but i would like to contribute to all patients receiveing Interferon by doing this "paper".

I am interested in how many of you would be willing to participate in this and how intense?

May you be well.
Claude

I was diagnosed with stage 3 melanoma days before Christmas in 2008.  January 2009, they performed surgery to remove the spot and then my nodes.  I had one nod test positive.  I did radiation treatments, then interferon.  I lasted for just about 6 months.  At that point I had gone from 198 lbs to 124, I am 6' tall.  The doctors would not let me stay on it any longer for fear that my body would start deteriorating.

I was informed of the side affects of Interferon, but my thinking was the longer that I stayed on the drug, the better my chances of the cancer not coming back.  So I "toughed it out".  I could put up with all of the side affects for a short period of time.  I had full body aches, every joint felt arthritic, every muscle ached.  I was always tired, no really fatigued, and I could never get warm.  I wore thermal long johns when it was 65 degrees outside.  And I was iratable

My doctor's said that these side affects would slowly wear off.  It might take awhile since I had stayed on it as long as I did.  The doctor said that it could take a couple of weeks to a couple of months for my body to flush all of it out and be totally rid of the side affects.  But I could handle this. 

That was in 2010.  Here it is 2013, almost 2014 and I still have all of the side affects.  For the last 3 years, the doctor's have tried to help me manage my problems.  They have now been telling me that the temporary side affects may be permanent in my case.  They say that there are other cases where this has happened, but I am wanting to find out how many cases.  One doctor told me of only 3 known cases where the side affects are permanent.

The bottom line is that you have to make the decision yourself.  In two months, I will have been 5 years cancer free.

Would I do the interferon again, yes.  It has given me another 5 years with my wife and my son that I may not have gotten if I had not done it.

Glenn

Hi Glenn,

I am new to this group and came accross your post becuase I was researching the long term effects of the Interferon.  I was diagnosed for the second time in 2012 with stage 3 and I did the month of I.V. interfuron with what was suppose to be 11 months of shots 3 times a week.  I made it to month 9 before I had to stop.  I had all the side effects that you did.  I have the severe depression, mood swings, cold all the time, joint pain, headaches, dizzy, light headed.  Now it is 2014 and I still have headaches every day, depression-but can't take anything becuase they make the headaches worse, memory loss and the worst for me-joint pain.  I love walking and hiking and the joint pain is still there where I have a hard time walking up the stairs without my knees hurting.  I have seen my doctor who told me it would take about a year for the side effects to wear off, but obviously, it is longer than that and they are still here.  I have read that some of these side effects never go away and in some cases the interferon can cause problems with the brain which will make these side effects permanent.

Would I do the interferon again?  I don't know.  I am happy that I am here with my family still and that I was able to see my oldest graduate from High School-that was my main goal to keep me on the drug.  I hope that you can find some releif and that one day maybe they will come up with something to help people like you and me out.

Congrats on being 5 years cancer free and I wish you another 50!!!

Karen

 

 

Karen

Karen,

I was catching up on some of the forums. I ran across the long term effects of Interferon. I had my hip replaced because of interferon. The treatment damaged  the joints that were in bad shape. In other words I guess at some time in the future the hip would have been replace anyway? Not sure. I was fine before. I also need my ankle replaced. The ankle was in bad shape. Years of abuse from basketball. Each year I feel worse. I am on Tramadol and mobic.If i didn't take the meds. I couldn't walk or get around. The knees are shot. BTW I am only 45 yrs old. I have 1 more yr. and I will be 5 yrs 'NED'. I had stage III Melanoma on my face and had 32 Lymph nodes taken out my neck. The strange thing was. That the Melanoma looked like a pimple. Or a ingrown hair. Pink looking. It took 3 different doctors to figure out what it was. Even the DERM .didnt have a clue. Just wanted to post that I do have problems after interferon. I do get bad headaches. i think that comes from the Tramadol?

Jeff

 Karen,

I justcame across your reply.  It is almost September 2014.  I still have the side effects, but even worse.  My fatigue lasts longer, the pain is worse and never goes away completely.  My doctor understands how bad it is and tries to help control it with medication.  This does help but does not eliminate it.  I have been totally disabled from work since last November, but the insurance company claims that i did not prove that i am bad enouh to be out of work and has denied me.

My vision is getting worse.  At first they thought that it was occular migraines but now do not know.  I start by getting a tingling sensation in my body.  My vision starts to get blurry.  Sometimes i see multiple, not just double vision but sometimes seeing up to 6 of an object.  Objects seem like they are rushing at me, sometimes i start to halucinate, then my vision goes.  I do not see anything except a white screen.  Not any shadows or shapes at all, just white.  This white may last a few minutes, or up to a couple of hours.  The doctors are now thinking that it is an Atypical Migraine with auras.  I do not know if this is also because if the interferon but i never had any type of migraines before I took the interferon.

Congratulations on seeing your oldest graduate!  Good luck and keep in touch.

Glenn

You will not get any from me that is good abot Interferon.  I started off at 44 million units per day.  My brain shut down or seemed to since I was in outlimits and my family was having to deal with it.  They gave it to me at home.  A nurse stayed until it was gone and split. 

For me Interferon was the worst drug they cold have ever put me on.  I don't think it really gives you anything other than pain and problems afterward. 

I don't want to get into it.  Its is a very bad drug.    I think after my interferon experience herbal dextox, an organic diet, some exercise and a very otomistic mind is why I am here to day.  No the nasty interferon they gave me for 1 whole week.

Melanoma Patient since 1984

I am starting the 3x a week for 48 weeks interferon in 2 weeks. Does anyone have advise as to the best time of day to administer the shots?
I completed the 4 week course and the fatigue was unbelievable, never knew I could sleep so much. I am concerned I will have similar fatigue with shots.