Yaya

About to start Gleevec trial

24 posts in this topic

Hi Gidget,

Well I started back on the Gleevec today. One pill and they will leave me there until next week and will see how I am doing. Scary but hopefully it will all work out.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Lucy,

Good Luck on the one pill. I have decided to drop from 4 to 3 as I don't feel as exhausted from the 4 when taking the 3. I guess the dosage is all one big experiment. Have fun. Regards Gidget

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Hi YaYa, Starting a trial is a little scary and also a little exciting. I'm currently in the SCOT trial and have completed my 12 Cytoxin infusions. I'm interested in helping myself and hopfully a lot of other people. I'm not familiar with Gleevec. What is it supposed to do? Suppress the immune system? Good luck, Birdman


Hugs for All,

 

Julie (Bird Lady)

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hi Birdman,

I am sure you are happy that you are done with the Cytoxan.

Gleevec does not suppress the immune system -- which is why some doctors are excited about the drug -- it works differently then the immunos in that it suppresses the signal to the body to lay down collegen thus suppressing the cells attack on the body. The drug, if succussful, targets the actual sclero condition unlike the immunos which treat sclero in a general sense but do not target the actual abnormal cells causing sclero. That is my understanding in a nutshell. The actual process of how the T-cells are suppressed can be found on the internet. Regards. Gidget

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Gidget

Awesome explanation! You summed up what my docotors told me and yes all the Sclero rheumatologist's are so excited because they think this could be not a cure, but a big help to all of us. Time will tell them, 6 months point will let them know if the drug works as thought. Gidget you are 2 months right? Do you feel any changes because on the 7th day of taking the drug I did feel I had some relief I.e. the itching had stoped and even my OT thought my right hand had started to loosen up - her words not mine. All my scleroderma is external and bad my skin score is 40 so slight changes either way are really noticed.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Lucy,

I am glad that you are having a positive reaction to the Gleevec. I would like to think it is working but I am not sure. My skin score is 19, so you may very well see results way before me. Good news is that you have made it through your first week! Hurray! Is your trial 6 months or 12? Have fun. REgards, Gidget

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Hi Gidget,

How are you doing with the Gleevec? What amount are you taking now? I am still at 1 pill a day. There is a bit of a complication and my Doctor needs approval to keep me on the drug give the sever adverse reaction, but so far no answer so I cannot be increased to 2 pills a day. This is not in my head, I am experiencing improvements even on this lower dose. Yes they are slight, but on Monday my message therapist said "what is going on you are a little softer today in your really tight spots arms and legs". She has been treating me for over a years 2 hours a week so she really knows my body. Then today my physio therapist said - gee you are a little looser today. So maybe, just maybe we are onto something?? I checked with my pharmacist here in Canada for 120 pills of the Gleevec is is $3,600.00 Canadian Dollars ouch.

Has anyone heard from Yaya and how she is doing?


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Hi Lucy,

I pretty much am on 3 pills a day with the option of taking 4. I can only tolerate the 4 if I have absolutely nothing planned and can spend the day on the couch with no motivation to do anything. Needless to say, I am taking the 3 more often then the 4. I don't have many problems with the 3 and I can still function without a problem. My skin is alot drier since starting the Gleevec - so I am moisturiizing like crazy. I take all 3 pills at dinnertime. This way, I can sleep through alot of the side effects as I was having a problem with nausea. I am glad that the pills are working for you. It has to be such a relief to have something work! Yes, the drug is expensive. I heard $35,000 a year to take it if not on a clinical trial -- ouch is right! Good luck with everything. Regards, Gidget

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I'm new so don't know anything about the Gleevac trials. Good luck and let us know how they go though!!

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