Giant Cell Tumor Network
Info on Interferon and Pegylated Interferon
I wanted to take a moment to discuss interferon alfa 2a treatment for those of you who may be suffering from bilateral pulmiinary metastasis like me. That's fancy talk for tons of nodules on both lungs after the discovery of the first tumor. If anyone else has more info to add on this treatment, please PLEASE respond here and edify my observations.
Interferon, as I understand it, is a chemical our bodies produce in defense of viral infections. In larger doses it has been used to treat Hepatitis C and kidney cancer. It is interferon's antiangiogenic property that is thought to be helpful in battling giant cell tumor of the lung.
In theory, tumors need to create new blood vessels in order to take in oxygen and survive. Interferon may help prevent the creation of any new blood vessels (veins, arteries, etc.) throughout the body and thus cut off the ambilical cord so to speak. Eventually, the GCTs will become too large to sustain themselves and die.
According to one study I have read, the tumors may also turn partially or completely into bone (ocification). That's a good thing, too.
Dosage: Take 2 - 3 IM Shots per week for 4 weeks on and 1 week off. 9 - 12 months.
Side effects they tell you about:
- Temporary flu lasting for 12 - 24 hours after injection. Muscle aches, mega fatigue, weakness, fever, chills and some joint pain. Usually all of the above. Treatable by tylenol.
- Chronic depression. Guilty thoughts, thoughts of suicide, or hopeless that suddenly manifest after a few doses (or even 1) should not be ignored. Treatable with the correct SSRI--for me, effexor XR 150 mg once daily.
- Chronic fatigue. May hamper your ability to stay awake during the working hours.
- Elevated kidney and liver enzymes present.
- Permanent: Chance of permanent kidney damage.
Stuff I wish I'd known:
- Chronic skin sensitivity. Pain tolerance become much lower. Even a playful fist in the shoulder felt tender for much longer than normal. No noticeable bruising issues though.
- Headache during the flu phase. I never get them, and they sometimes were at times migraine-caliber in my opinion.
- Demotivation to do ANYTHING! Very hard to get up for work during the first few months. This is partially due to the fact they were still messing around with my anti-depressants trying to find the right SSRI for me to use. Basically a life wrecker for someone like me who has always been very self driven and highly motivated to succeed.
- It can be many months before any results are evident. In fact, sometimes the disease will progress up until the time the treatment is withdrawn in 9 to 12 months, then start to get better for up to several months after treatment. No such luck in my case.
- Exercise? Yeah right! Good luck dealing with the extra fatigue, pain, and mental loss of will. Weight gain or loss or in some cases anorexia can result.
Is it worth trying? ABSOLUTELY. I have excellent insurance, though, and the drug is very expensive. But it may save your life. Here's the bummer: in the USA the FDA has not approved it as the standard treatment for GCT because there are too few patients for whom to perform human testing that is statistically up to the FDA's standards. Medical journal articles have been dedicated to examining a handful of cases over the last 10-15 years with GCT of the lung, but that is it that I know of.
Long enough post I think. I impore you to share thoughts or experiences with this treatment. I have not yet met or talked with anyone else taking it for the same reason, and for as long as I have (9 months).
Interferon, as I understand it, is a chemical our bodies produce in defense of viral infections. In larger doses it has been used to treat Hepatitis C and kidney cancer. It is interferon's antiangiogenic property that is thought to be helpful in battling giant cell tumor of the lung.
In theory, tumors need to create new blood vessels in order to take in oxygen and survive. Interferon may help prevent the creation of any new blood vessels (veins, arteries, etc.) throughout the body and thus cut off the ambilical cord so to speak. Eventually, the GCTs will become too large to sustain themselves and die.
According to one study I have read, the tumors may also turn partially or completely into bone (ocification). That's a good thing, too.
Dosage: Take 2 - 3 IM Shots per week for 4 weeks on and 1 week off. 9 - 12 months.
Side effects they tell you about:
- Temporary flu lasting for 12 - 24 hours after injection. Muscle aches, mega fatigue, weakness, fever, chills and some joint pain. Usually all of the above. Treatable by tylenol.
- Chronic depression. Guilty thoughts, thoughts of suicide, or hopeless that suddenly manifest after a few doses (or even 1) should not be ignored. Treatable with the correct SSRI--for me, effexor XR 150 mg once daily.
- Chronic fatigue. May hamper your ability to stay awake during the working hours.
- Elevated kidney and liver enzymes present.
- Permanent: Chance of permanent kidney damage.
Stuff I wish I'd known:
- Chronic skin sensitivity. Pain tolerance become much lower. Even a playful fist in the shoulder felt tender for much longer than normal. No noticeable bruising issues though.
- Headache during the flu phase. I never get them, and they sometimes were at times migraine-caliber in my opinion.
- Demotivation to do ANYTHING! Very hard to get up for work during the first few months. This is partially due to the fact they were still messing around with my anti-depressants trying to find the right SSRI for me to use. Basically a life wrecker for someone like me who has always been very self driven and highly motivated to succeed.
- It can be many months before any results are evident. In fact, sometimes the disease will progress up until the time the treatment is withdrawn in 9 to 12 months, then start to get better for up to several months after treatment. No such luck in my case.
- Exercise? Yeah right! Good luck dealing with the extra fatigue, pain, and mental loss of will. Weight gain or loss or in some cases anorexia can result.
Is it worth trying? ABSOLUTELY. I have excellent insurance, though, and the drug is very expensive. But it may save your life. Here's the bummer: in the USA the FDA has not approved it as the standard treatment for GCT because there are too few patients for whom to perform human testing that is statistically up to the FDA's standards. Medical journal articles have been dedicated to examining a handful of cases over the last 10-15 years with GCT of the lung, but that is it that I know of.
Long enough post I think. I impore you to share thoughts or experiences with this treatment. I have not yet met or talked with anyone else taking it for the same reason, and for as long as I have (9 months).
Replies to This Discussion
-
Permalink Reply by Sarah Gerstenkorn on -
I also was put on this treatment in February 2000 for the tumor in my sacrum and the metastisis to my lungs. I wish I could remember the details of the treatment but since I was only thirteen at the time, my parents made most of my medical decisions. I do however remember getting shots. At first, I believe it was three times a week, but I later was switched to a newer kind and had to have shots only once a week (possibly the peg-intron). I do know that my last dose was in January of 2002 and that there continued to be slight shrinkage of the tumors even after the treatment ended. As far as side effects are concerned, I had severe fatigue, bruised easily, and my hair thinned out. I was also very skinny and didn't have much of an appetite. The main doctor who treated me was Cynthia Herzog out of M.D. Anderson in Houston, TX. I believe I was one of the first cases they had treated using Interferon and definitely the youngest. While this treatment did not completely get rid of my tumors, it did shrink them and now they are calcified. If you have any questions for me or if I can help you in any way, let me know. I am so happy to have finally found people who have gone through the same experiences as me. The past ten years have been a long journey.
-
Permalink Reply by Quinton on -
Your story heartens me greatly! I had a CT done 6 weeks after stopping peg intron (which sounds like exactly what you had) and indeed, the tumors are smaller! We're not sure if that is because of interferon's delayed response potential or because of the steroids I'm on right now, but we'll find out soon when I get done with steroids, right?
I'm so glad you have a success story that you're willing to share. It is awful to think that interferon has to be suffered by anyone and not have any kind of effect. The bruising easily thing is interesting since that was nothing the doctors ever told me about. With you being so young at the time, they are probably more inclined to believe you about side effects!
Thanks again for posting this.
About
Badge
© 2009 Created by Heather on Ning. Create a Ning Network!
