Gleevec trial questions

[kathygirl]

On Wednesday I am going to a sclero specialist that is conducting clinical trials for gleevec. Does anyone have any questions about gleevec that they feel would be good to ask the doctor?

[mumof3]

Hi Kathy,

It's good to see you back. I sent you a couple of PM's on the Roadback site and I was worried when I didn't hear back or hadn't seen you post for a while. I have read about the Gleevec studies and it looks promising. Is it Janet Pope that you are seeing Wednesday? She is the doctor that I first tried to see when I tested positive for SD but never heard back from their office. The one thing I would want to know is how quickly it starts working or how long before you can expect to see results. And of course the obvious questions like side effects etc. Good luck! Hope it goes well for you!

[jeffn]

I have lots of questions but it is your appointment Please come back and share with us what they tell you.

[joyu]

How did it go?

[kathygirl]

So much info to share. After my appointments I got the H1N1 shot. I spent the last 2 days in bed I quess for me tiredness was one of the side effects of the shot. The other side effect is skin tightening. Icould hardly bend my arms. Hopefully in a few days that will subside. Both specialists said I must get the H1N1 shot. If I got the flu I could possibly end up in the hospital with a ventilator. I spent to much time in the hospital already so I got the shot.
Dr P told me that the Canadian Gleevec trials were so bad she stopped it. To many participants were getting Very sick. She said that the U.S.arm of the trial was having much better results. She also told me of other trials that are coming up. one is for the drug Rituximab and the other one she didnt name. IVIG may go to trial at some point as well.
So far the best way to treat watermelon stomach is argon gas treatments. I was hoping for a simple pill.
I asked about the cancer risks from cytoxin. She said it would be many many years down the road. Bladder cancer happens sooner if you get it. Bladder cancer is treatable. For anyone taking cytoxin keep drinking your water.
She is going to keep me in mind for trials. She said as soon as the bladder infection is cleared up start cytoxin for 6 months.
At my other sclero doc appointment we discussed cytoxin and she said to hold off for 6 weeks and see how I am. My skin is tightening over more of my body but not to the same degree of tightness as previously. In fact on left handI can pinch skin. She said sometimes what happens when a person nearly dies it could be from renal failure for example they find the sclero starts to calm down. She siad even tho for me it was a blood problem i was pretty close to deaths door and perhaps my sclero will get better. If I find the skin tightening is becoming a real issue then I can start the cytoxin again. She said as my hemo goes up I should feel better and better. I asked about my blood pressure going low andshe said probably because of the bladder infection I am dehydrated.
I know there were other things we discussed but I cant remember them now. My game plan for now is to keep doing what I am doing and watch for any changes. Really both appointments were encouraging.

[jeffn]

Lots of info Kathy thanks. There was a woman on the old board who had a daughter that was on a Gleevec trial and it was cancelled four months in because many were getting sick. She did not get sick but it did not seem to help her. Unfortunately her Sd was progressing rapidly so she did lose four months of something else perhaps. On the other hand there was a woman here that posted in the early summer involved in the trial and had very good results. I have to wonder what the differences are; dosages, condition of participants, or what. Does seem odd that one group did poorly and the other did much better if all things are equal. I guess thats why they call it a trial.

That certainly gave you lots of things to ponder. Hope that blood work continues to improve.

[Cubby]

I believe you said you did AP in the past, along with the cytoxan. If I got that wrong, please correct me. If I got it right, have you considered going back on it???

[kathygirl]

I started back on Ap a couple of weeks ago but then the bladder infection started again. I stopped Ap and had to go on different antibiotics. On Monday I started AP again and am drinking a ton of cranberry juice. I was to start the cytoxan when my hemoglobin hit 100. I was at 96 and am now at 90. The GAVE is acting up. Hopefully when I get my tummy zapped my hemo will rise and I can start cytoxan again. Crazy Crazy Crazy!!!!!

[joannern]

Kathy I sure hope you get some relief and very soon. Feeling constantly tired is certainly no fun. Of course neither are any of your other health problems
How strange our bodies are. I had H1N1 vaccine yesterday and so far have had no reaction. I expected a tender sore arm, but that did not happen either.

Will keep you in my prayers.

Joanne

[Cubby]

OH KATHYGIRL: You sure are in my thoughts and prayers!

[kimberhehe]

I was in the Gleevec trial for one year. It worked really well for me and I saw great improvement in lung capacity, skin scores and hand stiffness. I had some GI side effects, which went away after a few weeks. Taking the meds at night seemed to help a lot. I've become very busy since I started grad school, so I don't come here as often as I'd like, but if you have specific questions, email me at [e-mail]. Take care,
Kim