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What's it like to have Interferon?

Interferons (IFNs) are natural proteins produced by the cells of the immune system of most vertebrates in response to challenges by foreign agents such as viruses, parasites and tumor cells. Interferons belong to the large class of glycoproteins known as cytokines. Interferons are produced by a wide variety of cells in response to the presence of double-stranded RNA, a key indicator of viral infection.

Interferons assist the immune response by inhibiting viral replication within host cells, activating natural killer cells and macrophages, increasing antigen presentation to lymphocytes, and inducing the resistance of host cells to viral infection. When the antigen is presented to matching T and B cells, those cells multiply and strategically and specifically wipe out the foreign substance. That is why antigen presentation is so important to the immune response.

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 10 Comments
10"neicie"
at Sunday, 27 March 2011 14:12by Client4744
My husband in June 2010 was diagnosed with stage 3 mestastic melonoma, after surgical removal of 'lump' on the left side of his neck and removal of lymph nodes in his armpit. consequentially had radiation to affected areas. Now Doctors have decided that he may as well have Interferon 'just in case'.  
Doctors cannot find the primary and are not concerned as they say it will not change the outcome ? But have not said what the 'outcome' will be. Doctors have said why leave 'a stone unturned'.  
I'm at a loss to understand and cant seem to get any answers. Does anyone know why this would be so and what is going to happen ?
9"Mr"
at Wednesday, 09 March 2011 10:29by Ken Macdonald
"Nor Effective" 
 
No need to convey the side effects again - at some stage I experienced most of what has so far been reported 
My treatment went for about 9 months and was ended as there was a potential for kidney damage (one in the the family already needing a renal transplant is enough!) 
The irritating thing socially was that others saw it as chemotherapy and then were a bit shocked when informed of self injection - at the end of the day managing self injection just wasn't an issue 
Unlike chemo where you have treatment then a break between you are on continuous drip feed and as such feel at a low ebb for an extended treatment. As indicated by Laura maintaining a paid work schedule can be too optimistic 
In my case it didn't work with the emergence of secondaries 4 years after and contemporary wisdom now would doubt its usefulness for both treatment of cancers or MS
8"Not Nice"
at Saturday, 09 January 2010 10:22by Laura
Im a 42 year old melanoma patient with the first few months of interferon treatment over with. This is my current experience: 
extreme exhaustion and muscle weakness 
joint pains, strange but brief vision failures, 
mental confusion and inability to focus, 
dehydration and painful injection sites, 
dry mouth with sores, 
hair loss to the point where it seems inevitable that I will be bald, and extreme skin dryness. It is hard to explain how bad I feel to the people who are around me and concerned so I developed a system of quantifying my status in terms of 1 to 10, 10 being feeling great and when people ask it is much easier than explaining every horrible symptom repeatedly! saving my little energy is very helpful and may help you. also, it is not good to focus on bad health so this method can keep conversations along more positive terms. when I tell someone I'm a 3, they get the idea pretty quickly that its a day they shouldn't necesarily expect me to go out or even keep awake...and you save your energy trying to be more explicit. I think the treatment might be too difficult if you expect to keep a work schedule. Cheers and good luck
7Comment
at Friday, 02 October 2009 20:55by Shaw
I had a year on Interferon from mid 2006 to mid 2007. It was difficult but doable. It wasn't a year of hell, but it was hard physically. It was mostly a very happy year for me. The first month is the hardest having 36million units a day five days a week at the hospital (you are on a drip). After that you go on a reduced dose three times a week, for 11 months, which you can inject yourself (I was injecting 18mil units 3x week at first, but had to reduce that to 9mil 3x week after it was damaging my liver).  
 
One thing to keep in mind if you start the treatment is you can stop at any time. There is no shame in stopping treatment for whatever reason. There is a school of thought by the way that most of the benefit is from that first month. The treatment was easier to cope with as time went by, I suppose because it became just part of my life. I didn't mind injecting - you use a pen injector like diabetics do where you dial up the amount and then you inject. It is painless as the needle is so fine. At first I was a bit concerned about injecting myself, but it was no trouble. 
 
I drank enourmous amounts of water in the first month, the treatment certainly dehydrates you. Some of the headaches are probably due to deydration. At night my mouth would become totally dry. 
 
I lost 20 kilograms and was very tired much of the time. At first I couldn't go to work, but once the dose was reduced I was able to go back to work. 
 
When people say it is like the flu, they mean that your bones and muscles ache like the flu. I only seemed to get the headaches at night, but they weren't terribly painful. Once you get used to it all, the treatment isn't as bad as it might sound, you just feel sore and rundown basically. I went from being a nightowl, usually going to bed around midnight, to being ready for bed by 9:30, or earlier (I'm back to my old nightowl ways again now!) 
 
I found meditation to be good. Right from the beginning, when they turned on the pump at the hospital, and later when I injected, I would meditate and welcome the interferon into my system. I felt the treatment was doing something positive, and I suppose because it was me injecting myself, I felt like I was involved in my treatment, not just receiving treatment from others. 
 
You have to balance all these things up; the physical hardness and the time it uses up, against the possible benefits it might bring. It is a decision only you can make. Don't get ahead of yourself, thinking about the year ahead, just take it one day at a time.
6Comment
at Monday, 24 August 2009 14:01by Judy
It is just on 1 year since I had my melanoma operation and I only had interferon for a short time. The main reason was that I had clotting in my arm from the picc line put in so the oncologist stopped me having it. Had to inject myself twice a day with blood thinning injections. 
 
After reading what others have had I agree that some of the side effects are pretty full on. Dry mouth was incredible and felt like the tongue was going to stick to the mouth so was constantly drinking water. Food didn\\\'t have any taste and it didn\\\'t matter how nice it was it was an effort to eat it as it tasted like cardboard. Only thing I liked was icecream as it made the mouth feel nice. 
 
My joints still ache especially when I first get up and I am still constantly tired. Having a lethal lounge doesn\\\'t help either, sit on it for 5 minutes then wake up about an hour later. 
 
My GP reckons I have a Guardian Angel watching over me as I just had another couple of moles taken off my arm which came back showing early signs of a melanona. 
 
Like Rosemary I did get some depression and thankfully for family and good friends they helped me get through it. 
 
You just have to have a positive outlook on life and enjoy every minute. Good luck to you all.
5Comment
at Wednesday, 13 May 2009 15:32by Alison
I'm six months into Interferon treatment. I could possibly now work full time (if I had a job!), but certainly couldn't have in the first three months. I get headaches, fatigue, dry mouth and thin hair, and the odd dizzy spell. I've been doing four or five lots of exercise a week, and that really helps my energy levels, but is quite time consuming. I inject at 5pm three times a week, then have to go to bed at 8.30 and feel a bit rubbish the next morning. I'm OK by lunchtime. 
 
But I think they don't tell us what it will be like because it's so different for everyone. Have you read the side effects literature? Everything from anorexia to heart failure to hallucinations! My current thing is a salty mouth, I'm about to drop my dose to see if it's Interferon related.
4Comment
at Saturday, 07 March 2009 05:20by deirdre
I am from the United States. I was on interferon and did fairly well. My dilemma is a young woman whom I am now corresponding with has a 6 mos old baby and has to work full time. She wants to know the experiences of others. She can go on a clinical trial with ipilimumuab but has a 50% chance of receiving a placebo. So she is weighing her options. Any comments would be appreciated
3"Ms"
at Sunday, 16 November 2008 12:31by Rosemary
I managed a year of interferon and did have a subsequent recurrence of melanoma after 8 months. 
Theres no doubt this is an exhausting drug. I didn't work for the first 6 months, and then parttime. Mastering the injections was much easier than I expected. I was quite apprehensive at first, and then realised it was very quick and i could do it myself after the first session with the nurse. The main things I experienced was fatigue, my hair thinned out a lot, but not badly enough to need a wig,I got a bit breathless with exercise, and I could only drive locally on the days after the injections. I got one bout of the flu early on when my white blood count went down, so had a week (or 2) off interferon. The things that kept my side effects under control, was drinking lots of water, walking every day, eating good food, taking panadol before every injection and kept up exercise like yoga. I wasn't considered prone to depression, and didn't suffer any adverse side effects.
2Comment
at Tuesday, 19 August 2008 15:27by Larry
I had interferon, as my oncolcogist believed it would improve my chances of survival even if it was only by 1%. 
 
What was it like to have interferon. I also have a neddle phobia, so that was a drama in itself. I had every symptom the doctors warned me of. I lost nearly 1/3 of my body weight, I fainted on at least 5 occiaisions, I had incredible pain in my joints, at one stage I could not get out of bed for 13 days, except for the toilet and even that was a struggle. I could not focis my eye sight for anyway from 5 to 30 minutes on at least 5 occaisions. The first four weeks of one and half hours to three hours in a chemo ward with cancer sufferers was a daily experience I will not forget. The interferon headaches were absolutely debilitating, to an extent that I could not do anything, I certainly could not work. Then come about month 9-10 I turned into superman, made a chair, pergola and cubbyhouse without any paperwork or assistance, then for the last month I was a tired old cancer patient again. Without my wife I would have been hospitalised, I was her patient. I self admitted myself into hospital at one stage. 
 
So all I can say is the oncolcogist do NOT overstate the side effects.
1Comment
at Monday, 07 July 2008 16:39by dion gillard
It\\\'d be nice if this information told us something about what it is like to have interferon, not just what it is!