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Post Interferon victim

I had stage IIIc melanoma.  Treatment was high dose interferon 44 million units IV Infusion for 1 month, then shots for 1 year.  My first infusion was given to me as an outpatient, then a visiting nurse came to the house to administer the infusions at my home.  I black out after the first infusion.  I woke up in the hospital 5 days later with them pumping the stuff out of me.  My family said I was crazy during my black out.  Said they called the nurse practioner  and was told to continue.  When I finally came to I went home from the hospital in a day or so, had an appointment with the nurse practioner and she wanted to give me a lower dose.  I refused.  I went through detox from homeopathic therapies to get rid of this stuff. I went organic, and tried to repair my body from what the interferon did to me.  My cancer did go away, but I don't think interferon had anything to do with it.  

Since then I have been disabled.  I have terrible aches in my bones, especially the bottom of my feet and the palms of my hands.  I have had hives that are so horrible all along my back, my abdomen, and other areas of my limbs, I have suffered depression, severe depression.  I am now allergic to medications I was never allergic to before this poison was injected into my system..  I had a stroke, constrictive pericarditis, a heart attack, cataracts.  I truly believe all of this things were from the toxic amount of the drug I was given.  I think I was fried.  I read about this drug and it changes the cells in your system.  I believe they are called dendritic cells.  I thought after so many= years it would be gone from my system but its not.  It changed the cells in my immune system.  

I'd like to know if others have endures what I have.  And if the 44 million units seemed an overdose?
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317787 tn?1473358451
Hi I am so sorry for what you have and continue to experience.  I don't know anything about high dose interferon for melanoma though there may be others here that can help.   I looked it up and found this site where others were talking about it.  I hope this helps.  Dee

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/high-dose-interferon-infusions-complete
Helpful - 0
317787 tn?1473358451
Hi I don't know how active it is but MH has a Skin Cancer forum and I see that interferon is mentioned there.  One of the doctors said it is used after a resection to prevent relapse.
There are no doctors on here any more but still patients willing to help others as best they can.
Good luck
Dee
http://www.medhelp.org/forums/Skin-Cancer/show/290
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317787 tn?1473358451
Hi while searching I found an old question (thread), if you go down about halfway you will see information about the side effects.  Near the bottom there are a lot of threads you can click on to see what other people felt during tx.  I don't know what type of interferon you were on but maybe one of these posts will help you.  I hope so.
When I took Pegasys I was on 180 a week for 48 weeks, then was on Pegintron 135 a week for 24 weeks.  The second one was much harder.
Do you take any vitamins?  Calcium and magnesium helped my muscle pain.  Water is very important, dehydration hurts

http://www.medhelp.org/posts/Hepatitis-C/4-year-post-peg-interferon-treatment-problems-please-help/show/98689
Helpful - 0
Avatar universal
My mother has a friend who treated with interferon for melanoma.  She told my mom if and when the melanoma comes back she absolutely will not take the drug again.  

The feelings I have about the medical community and system that has inflicted this "treatment" on people with such flippancy and disregard ... ahhhggh.  They've destroyed as many lives as they've improved.  

Try to stay anti-inflammatory in what you eat.  Stay in a clean environment.  I recently left a fairly polluted city which was where I treated with INF / RVN combo and moved to cleaner air, and my symptoms have subsided a lot.  I believe the treatment caused enhanced immune reactions to pathogens, carcinogens, pollutants in the city air.  Just my theory.
Helpful - 0
253566 tn?1219679699
I do not know what to say except some of us here know what you went thru maybe by about 1%.

The Mayo Clinic has become the leader in Post-Interferon Syndrome treatment. Since this treatment has mostly been for HepC PISers it may not be as effective for you poisoning.

If you are able to get to a Mayo Clinic I believe that you may find some relief.

Currently the only treatment we know of that the Mayo Clinic has released is Low Dose Naltrexone. Naltrexone 50mg used to help alcoholics stop drinking. but in very low dose has many uses. Mayo is using 4.5mg AT THE HIGHEST DOSE for PIS. I just started, and like you, have become very sensitive to EVERYTHING so started at 2mg (actually I think it would be 2ml since I dissolved my 50mg into water). The 2mg taken once at night is pretty powerful. I will try a 3mg in a month.

It reduces the inflammation thru the body, crosses the brain barrier where it reduces the inflammation there - where it has been found that inflammation in the brain probably causes chronic fatigue syndrome.

There are a few members here on LDN who say they feel much better. I have a link to a very old thread to a very early LDN pioneer who is also a scientist and explained it very well. Unfortunately I am looking for my MedHelp bookmarks and when I find that post will let you know. The member/pioneer is still very active here...

Anyways, hope to hear from you on what others have written. best of luck, frank
Helpful - 0
317787 tn?1473358451
Hi there, not sure if you were talking about "HepatitisResearcher" or not but I found a lot of his posts just in case, Cheers Dee!

http://www.medhelp.org/user_posts/list/165565
Helpful - 0
253566 tn?1219679699
Thanks Dee for your NEVER ENDING RESEARCH for everyone everywhere on MedHelp!!!

It wasn't "HepatitisResearcher" but "mhudnall" - He has two Bachelor of Science in Zoology and Clinical Laboratory Sciences.

http://www.medhelp.org/personal_pages/user/878964

This post started in 2009. http://www.medhelp.org/posts/Hepatitis-C/LDN/show/917546 - Though crazy LONG I think you will find it really interesting as, if I recall, it contains some of the supplements you are currently using right now... Of course, at the time everyone was really poohpoohing everything about LDN as snake oil but this is now being used as the only known protocol by the Mayo Clinic for PIS. There are some other things mhudnall talks about that may be of interest to others but way beyond my pocket book.

The person who posted about Mayo and PIS - LDN on here posted around 2010 so very simpatico!

OK, gotta take a short nap and try to get something done tonite... like pay bills.

btw, a late Merry Christmas! Hope yours was really wonderful, frank
Helpful - 0
317787 tn?1473358451
Dear Frank, thank you so very much! Funny I heard from MHudnell a short time ago.  Thank you so much for correcting me, I really appreciate it so much.  I am not sure why I thought it was HR.  Yes, I am constantly looking for info, maybe someday I will find the right combination :)
Can I claim "brain fog"  28 months later ha ha

I really appreciate the information.  I am on my way there now.

Uh, pay bills, I paid one bill twice, now I don't have the car payment.  I hope it will be ok to be a few days late.
This is the third time I have done this since October. I have to start keeping better track.  It really screwed me up for Christmas this year.

Merry Christmas to you friend and in case I forget, Happy New Year!  :)
Helpful - 0
747988 tn?1396536878
I pay all my bills direct every month-I'm all over the place with money-I used to be an accountant!
Helpful - 0
317787 tn?1473358451
Thank you for sharing, I think that is where I made a mistake, I have these auto pays on line, then I forget I did them and I pay online again. ARGH
I just did it again, paid one bill twice. Didn't pay the electric.
A dear family member told me to write it down, I do! ha ha
Helpful - 0
747988 tn?1396536878
post it notes calenders and phone reminders everywhere and still you can't remember! I know it so well. I also use my credit card instead of my debit card for spending so that I can receive an itemised bill and also reward vouchers or cash back with the right card and then I pay it in full every month by direct debit.It also helps me to check my bank account statement more easily as it's all direct debits going out.Anything to make life less complicated! I've got into supermarket shopping online too so it's delivered to the door-saves loads of energy and money too.
Helpful - 0
568322 tn?1370165440
Hep C patients used 3 million units three times a week long ago before they came up with the pegulated version.

Co
Helpful - 0
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