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Gleevec


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#1 Gidget

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Posted 12 November 2008 - 01:18 PM

Hi Everyone -- Just wanted to post some of the preliminary results from the Gleevec clinical trial being done by Hospital of Special Surgery in NYC. Basically as of Oct., 6 people have completed the trial. Of the 6, the average skin score when down 5 points. Of the 6, 4 had sclero with lung involvement. Of the 4 with lung involvement, for 2 the PFTs stayed the same for the other 2, the DLCO went up by 5 and 10 points.

October was my 6 month point in the clinical trial. For me, my skin is great; my joints feel really good; and I feel much more flexible. Alas, however, my PFTs have dropped quite a bit, so for my lungs it has not been a success story for me.

I would definitely recommend the Gleevec if you have skin issues. I am on 400 mg a day. I had trouble with nausea initially but split the dosage where I don't take the pills all at once and that has been a huge help. Now I am back to searching for something for my lungs as I was stable but am now not. Regards, Gidget

#2 janey

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Posted 12 November 2008 - 03:45 PM

Gidget,
Thanks for sharing the results of the study. It was very interesting. I'm sorry it didn't help with you lung issues, but it does sound like it was great for your skin. Hooray for that.

I hope you find something for you lungs. I've been on cellcept for 1.5 years and my pft in Feb showed my lungs were stable. I have another pft in Dec, so it will be interesting to see if they are still stable. By just the way I feel I expect a little improvement. Have you tried cellcept? If not, it might be worth talking to your doctor about it.

Thanks again for sharing.
Janey Willis
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#3 canon

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Posted 12 November 2008 - 04:22 PM

Hi Gidget,

Glad the skin scores and joint pain improved in the study for you and sorry your lungs did not respond. Thanks so much for letting us know about the Gleevec trial. Maybe with alittle tweaking it will work for everyone in all ways.

With gentle thoughts.

Judy
A happy heart is good medicine.

#4 Wohali

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Posted 12 November 2008 - 04:43 PM

What are PFTs and DLCOs?

#5 Gidget

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Posted 13 November 2008 - 04:16 AM

Hi Janey,
Yes, I tried Cellcept. I was on it less than a month as I had break through bleeding -- so I was pulled off it. Regards, Gidget

#6 canon

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Posted 13 November 2008 - 06:33 PM

Wohali,

PFT's are pulmonary function tests and DLCO is part of the test showing what is called diffusing capacity and shows decline or not in lung function.

With gentle thoughts.

Judy
A happy heart is good medicine.

#7 aka79

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Posted 15 November 2008 - 01:18 PM

Gidget,
Thanks for sharing this with us. I am sorry your PTF was not better.
I have heard good things about Gleevec. How long are you supposed to stay in the trial? Maybe 6 months is not enough time to see the full effects? Would they increase your dose?
Are you allowed to take something else while in the trial?
I wonder how Gleevec would interact with other drugs like Cellcept...

Please take care,
Ana

#8 Gidget

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Posted 18 November 2008 - 01:57 PM

Hi Anna,
The trial is a 12 month trial -- so I will be on it until end of Feb.
Drugs.com has a drug interactions tool that lets you put in all your meds and then it tells you what to worry about. Here is the link. You basically enter all your meds and then hit the button and it shows you what you need to know. According to the link, there is no negative interactions between Gleevec and Cellcept. good luck. gidget

http://www.drugs.com...teractions.html

#9 GocartMoz

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Posted 19 November 2008 - 07:43 AM

Hi Gidget,

Glad to hear the trial has been a success as far as the skin and joints go. Hopefully in the future you will see similar results with respect to the lungs. I hope all is well with you.