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The doctors are discussing putting my 10 months old son on gleevec, to try to reduce his plexiform nf. I have heard about the 3 years old girl having a reduction in her tumours. Has anybody any other results?
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gleevec
- By denfen
- Posted May 4, 2009 at 5:08 am · 25 replies
- In NF1 and children
- Shared with the public
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- By CindyLouWho
- Posted May 4, 2009 at 7:10 am
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There was a lady who posted her daughter's results recently on the CTF BB. If you go to the children section there, the thread is called "Rapamycin - children with Plexiform Neurofibromas (NF1)".
CIndy
- By CindyLouWho
- Posted May 4, 2009 at 8:24 am
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Sorry, I probably should have clarified...even though the thread was called Rapamycin, the girl I mentioned was doing the Gleevec. I've heard a few rumors of tumor shrinkage but not to the degree that the little girl who was mentioned in the media had. Not saying there aren't stories out there like that just that I've not heard of any that extreme. At least its good to know that NF tumors are shrinkable.
Cindy
- By denfen
- Posted May 4, 2009 at 8:55 am
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Yes, I was wondering in the beginning when I read the thread if you were mixing the drugs. But then I saw the last post.
The most important thing is to stabilze the plexi. But of course we are hoping for shrinkage. even a small shrinkage is good.
- By CindyLouWho
- Posted May 4, 2009 at 9:45 am
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Sorry, I probably shouldn't post in the mornings...takes to long for my coffee to catch up to my brain! LOL
- By oneforjesus
- Posted May 4, 2009 at 5:39 pm
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i was told by a former co-worker who had a tumor on her overion(not nf),and took
shark cartlige it helped her so she was being nice and
thought it might work on me but nothing happend.
- By Handman
- Posted May 4, 2009 at 11:15 pm
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I have been doing a lot of research thru Google for treatment options for NF1. There was an article in the "Health Day News" dated 10-31-2008 titled "Gleevec can effectively shrink Nuerofibromas". Also, Indiana University School of Medicine Scientist Report dated Nov. 17, 2008 stated "Gleevec hold potential as first drug to successfully treat NF". You might want to try and locate these articles so as to make a more informed decision for your child.
Also, NIH, National Institute of Health, is currently doing clinical trials on a drug called "Pegintron". In most cases nuerofibromas stop growing and sometimes even have shrunk.
Just some info you might want to research further. I have been trying to find something to treat these nuerofibromas other than surgery.
Hope this helps !
- By CindyLouWho
- Posted May 5, 2009 at 12:00 am
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Actually, I did hear two encouraging reports about interferon (same drug as the previous poster mentioned) on two children with facial tumors. The rumors I had heard were that one child's tumor shrank substantially to the point that people thought she had surgery. The second one had noticed an improvement in her tumor in only a few injections. I had thought that they were combining it with a cox 2 inhibitor but I don't see any mention of that in the trials.
I wonder if they have started the photodynamic therapy yet, I thought that one sounded so promising but it seems to be slow to get off the ground.
- By denfen
- Posted May 5, 2009 at 2:38 am
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Very interesting information!
The three drugs that have been discussed are interferon, sirolimus and gleevec.
We live in europe, but the doctors have contacted american doctors for information.
- By azur
- Posted May 5, 2009 at 12:37 pm
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Where are you from ? I am from France and don't know if doctors know all these drugs trials . Thanks for your answer
- By denfen
- Posted May 5, 2009 at 1:57 pm
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I think PEG-interferon is a special type of interferon. Are the results with Pegintron better than with normal alfa-interferon?
- By denfen
- Posted May 22, 2009 at 10:58 am
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Tomorrow we will start giving our son gleevec!
- By Jeroen
- Posted August 15, 2009 at 9:11 am
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Iam very interested in trails with Gleevec. This moment iam getting paralysed in my left leg and both hands. I have plexiforms almost every nerve and spinal entry my back and manymany more ... Last weeks send the researchers ad Indiana university and the nfcure-project a email, ad this moment no reply.
I have to convince my neurologist to start with GLEEVEC (I have to pay it my self), anyone more information accept the girl ad the Indiana university and the start of some trials?
Thanks.
- By denfen
- Posted August 15, 2009 at 6:16 pm
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my son has been on gleevec for 3 months now. We will soon have an MRI done, so will know more then. But I have the feeling that the tumors are still growing, although hopefully somewhat slower than earlier. I will let you know in a couple of weeks.
btw, gleevec is an extremely expensive drug.
- By Jeroen
- Posted August 15, 2009 at 7:01 pm
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Thks for your reply. I know its a expensive drug, but if it works it works. I have to choise for future, sell my house and life in a care centre or give it a try, sell my house and buy the meds.
There is a small chance if it works the insurance will pay. That’s the benefit from Holland.
Its remarkable difficult to find results from trails. I have send some emails to Indiana university still no reply.
Hopefully for your son and other nf1 patients it works.
- By denfen
- Posted August 25, 2009 at 7:28 am
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good news. The tumour seems to have stabilized after 3 months on gleevec.
- By hellokittycat
- Posted August 25, 2009 at 11:17 am
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I took gleevec for 6 months, after my NF related cancer surgery in 2004. I am glad to say that I am still cancer free. Yes, it is very expensive. At that time it was over $4,000 for a 30 day supply. Fortunately my work insurance covered it. Now that I am retied, it will be a different stoyy, if I ever have to take it again. Something is wrong with the outrageous cost of live saving drugs in America.
- By JLEE2
- Posted August 26, 2009 at 10:34 pm
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I, too, take Gleevec but that's because in addition to NF1, I have cancer. GIST to be specific. It is closely related to NF in the sense that I don't have the off switch on the NF gene chromosones and I don't have the off switch for the enzyme that produces KIT (short hand for some long scientific name) which uncontrolled becomes cancerous. The trouble with Gleevec and its availability is with the FDA. My understandins is that it was designed for cancer treatments and if perscribed for another - off label use - no matter how compassionate the use or therapeutically effective - that insurance companies won't pay. It's the structure of the current health care system and even if you are fortunate to have health insurance that pays for drugs the plan forumarlaries may restrict off label use. The system needs fixed.
- By kml772
- Posted September 2, 2009 at 11:54 pm
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How do you get involved in trials and who supplies your treatments?? Hospitals, specialists?? Please help!!!!
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