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Anybody in the Gleevec study


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#1 Gidget

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Posted 03 March 2008 - 06:06 AM

Just got back from NYC and was approved for the Gleevec study. Is anyone participating in a Gleevec clinical trial and if so, how are you feeling. I get the impression that best case, I will feel OK; worst case, I will feel like I have the flu all the time. Let me know. Regards. Gidget

#2 Sweet

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Posted 03 March 2008 - 07:29 AM

I'm not in the study, but I wanted to congratulate you for being approved!
Warm and gentle hugs,

Pamela
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#3 Snowbird

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Posted 03 March 2008 - 12:53 PM

Hi Gidget

I'm not in any study either but I wanted to wish you good luck with your trial.
Sending good wishes your way!

#4 faith

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Posted 29 March 2008 - 12:30 PM

Hello;
My husband has been diagnosed with Scleroderma 2 month ago..he is not feeling good. Exhausted most of the time. He was accepted in a trial in NYC and he will start next month..He will be taking Gleevec...
Have you started taking Gleevec. Do you know someone who took it, how are they doing?

Thank you

#5 jefa

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Posted 29 March 2008 - 02:37 PM

Hello, Faith, and welcome to the ISN Forums.

I am sorry to hear that your husband is struggling with scleroderma, but glad you both have found us. I don't have any personal experience with the Gleevec trials, but here is a link to another recent thread on the subject.

Please keep us posted on how the trial goes.
Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#6 Sweet

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Posted 30 March 2008 - 04:51 AM

Hi Faith,

Welcome to the Sclero Forums! I'm really happy that you've joined us. I hope you can find the information, support and friendship here that will help both you and your husband. I'm sorry to hear that his sclero seems to be progressing quickly. Please do keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 Gidget

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Posted 31 March 2008 - 02:42 AM

Hi Everyone, Thank you for your warm wishes and kind thoughts. I just got back from NYC and should start the Gleevec today -- I think I will be fine and am not too worried. I have to take 4 pills a day and was happy to hear I can take them all at once. The skin biopsy did not hurt as I had something like novacaine. Too bad for the scar. The next skin biopsy at the end of the trial will be pretty much right next to this one. Have fun. Gidget

#8 Lucy

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Posted 03 April 2008 - 05:43 AM

Hi Gidget,

I have my appointment for April 22nd for the biopsy, blood and urine. Paper work is all complete. You have been on the gleevec a couple of days - any immediate problems with taking the drug? Did your doctor give you any idea of what they were hoping from this drug? Mine says very little.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#9 Gidget

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Posted 03 April 2008 - 11:06 AM

Hi Lucy,
Day 1 took 1/2 dose and felt nauseous most of the day. Day 2 took 3/4 dose and had aches where I don't normally ache. Day 3 took full dose and just feel very lethargic -- like I could sleep for a week but it could be that I am having a very hectic week to begin with. Goal of the study is to hopefully reverse/prevent some of the skin thickening-or that is at least what I am hoping for--hence the reason for the skin biopsy to see if the fibrosis is reduced. Good luck on the 22nd. I'm not sure what your dosage will be but mine is 400 mg - 4 tabs at once. Gidget.

#10 Lucy

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Posted 14 April 2008 - 02:21 PM

Hi Gidget,

My dose is is 4 100 mg gleevec tablets a day - the same as you. The study is for 6 months only and is for active diffuse scleroderma.
However the study I am in is double blind, placebo-controlled trail. Out of the 20 participants 4 will get a placebo and we will not know who, nor will my doctor.
Has your initial discomfort from taking the drug subsided yet. How are you feeling now?
Does it make you nervous taking this drug and what it may or may not do to our already weak bodies? Since NYC started their study last year - have you heard any first results good or bad?
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#11 Gidget

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Posted 15 April 2008 - 05:24 AM

Hi Lucy,
Which Gleevec study are you in? Yes, it does sound like we are on the same dosage but everyone in NYC get the Gleevec drug (no placebo) and it lasts for a year. I am happy that there is no placebo because I am flying from Florida to NYC each month and I would hate to spend the money out of pocket for a placebo.

So, I think I have been on the pills something like 3 weeks now. I'm still trying to figure them out. When I was taking them in the AM, I would feel nauseous all morning. So, I started taking them more mid-day/early afternoon and that worked better. Also, in the AM, the pills and coffee did not seem to mix well and for whatever reason, I need a cup of coffee in the AM. My problem now is that within 2 hours of taking the pills, I start to feel tired but at least I am not nauseus. So, if I know I will have a hectic day, I tend to take them more towards the end of the afternoon just so I don't have to worry about how I am going to feel. I also can't figure out if I should take them with a full glass of water or not as maybe that is what makes me nauseous. Also, I have to find out if I can split the 4 pills up because 2 pills -- no problems at all. 3 pills-- not much problems at all. It is the 4 pills where I have the problems with feeling tired and nauseousness. But good news is that both the tiredness and nauseousness just last about 2 hours or so. So in any event, by the evening I am fine. And to top it all off, I am on Warfarin and Warfarin and Gleevec do not play nice together -- so who knows maybe all of the symptoms are related to the Warfarin/gleevec issue. Right now they are monitoring my blood chemistry weekly because of the Warfarin/Gleevec issue. Also my joints ache a little bit more but no biggy. I think it is because of the water I am retaining and will ask NYC for a water pill.

As far as the NYC study, they had 16 patients that have been on the drug for a couple of months. Of the 16, 1 dropped out as she did not like the way she felt on the drug. The other 15 are still on the drug. One lady says that after 3 months on the drug, her hands feel like "normal", whatever that means. Even with my complaints, I plan to stay on the drug for the year.

As far as do I think the drug is working -- I don't know. I feel like it doesn't hurt as much to take a deep breath and I feel like I can open my mouth wider but this could all be my imagination as well. Like maybe the weather is warmer, and that is why I feel more flexible-who knows.
For me this is the right trial for me as should Gleevec show success, then the next trials are going to include a placebo version and lfor me, if I am going to do a clinical trial, I want to make sure I am getting the meds especially with my travel cost.

Have fun. Let me know how the drug works for you. I will let you know if I learn the "secret" as to how to take the drug. I'm sure there is. NYC wasn't real helpful -- basically if you take it on a empty stomach and you are nauseous, then take it on a full and see if that helps. I'm sure you will do fine. Regards, Gidget

#12 GocartMoz

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Posted 15 April 2008 - 07:45 AM

Hey Gidget,

Just wanted to wish you the best with the Gleevec Study. Sorry about the tiredness and nausea. We all know how bad that can be. Best of luck with everything. By the way, how is NYC? While traveling once a month can get old real quick, at least you are going to a fun place. Always lots to do in NYC.

#13 Gidget

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Posted 15 April 2008 - 01:08 PM

thanks Dave for your support. I try to fly in and out in one day - so not much fun there. I like NYC but not when it rains. The Gleevec study people are pretty good about getting me in and out on time so I can catch the flight. It is easy out of Jacksonville and into LaGuardia but I think the flights are cheaper into JFK but the cab is more. So, I have to check out public transportation to/from JFK. I'd rent a car but parking at the hospital is a minimum of $40 even if I am there just 2 hours. Pretty steep. Have fun. Gidget

#14 Lucy

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Posted 16 April 2008 - 03:30 PM

Hi Gidget,

My rheumatologist is Dr. Janet Pope who is on the INS Medical Advisory Board - I am so glad to have her she is a fantastic doctor because she just knows so much about SD. She is running the Gleevec study I am involved in which is in Canada. I do not know why your study is one year and mine is 6 months?? I have to get the biopsy on my tummy so I am a little rattled about that because my skin is so thick/tight there. Unfortunately for me it is a 9 hour drive one way to see her, but I only have to go 3 times during the 6 months. Thanks for all the info you shared I very much appreciate it and I will let you know under this thread how I do and anything I hear.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#15 oddone

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Posted 17 April 2008 - 03:35 AM

My husband has decided to go ahead with the Gleevec Study. He has the same DR. as "Lucy" here in the forum. His screening is scheduled for April 28. Hope all continues to go well Gidget, look forward to some updates. Are PTF's and ECG's performed at the screening along with the bloodwork, urine and skin scores?
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#16 Gidget

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Posted 18 April 2008 - 06:34 AM

Lucy, Oddone,
Yes, I had to have the PFT, Echo, Blood, Urine and Skin Biopsy. My Skin Biopsy was taken on my forearm about 2 inches above my wrist. I think they might have preferred taking the biopsy from my hand but I balked at that as my hands are tight enough without having to deal with stiches and what not. Two weeks later, I cut and pulled my own stiches out. The 2nd skin biopsy at the end of the study will be taken in close proximity to the first. I'm doing better on the Gleevec although within a hour of taking it, I don't feel so great but then it passes. So, I try to take the meds when I can just sit still for the hour. I think I am retaining some water but who knows as I hate to look too closely at myself. I figure at the follow-up, we will figure that out. So, I think I am pretty much doing good on the meds -- mean, if all I have to do is sit still for an hour -- that is not bad. Keep me posted and I will do the same. Regards, Gidget

#17 Lucy

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Posted 27 April 2008 - 11:13 AM

Hi Gidget,

I started the Gleevac April 24th - I took the 4 pills from the first day. I was told to take it with my largest meal - pick the same meal everyday with a full glass of water. I have not had any problems other than cramps in my tummy for about 2 hours after and then a few runs to the bathroom.
You were right. The biopsy was nothing - they did it on my tummy and did not even require a stich.
How are you doing? Have you noticed any improvements in your scleroderma?
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#18 Gidget

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Posted 28 April 2008 - 03:21 AM

Hi Lucy,
You are smart to take the pills towards the end of the day as I was trying to take them earlier so that I could drink water and flush the drug out. But when I tried this, I had alot of queeziness and nausea. My last 2 weeks, I have felt horrible -- like can't get out of bed or off the couch -- but it turns out I have strep -- so the timing of the strep and taking Gleevec has not been the best -- but it has to get better.

I am glad you are doing well. I don't really see any difference, and I think everything is a little more puffy from the water retention. My next apptmt is on Friday, so we shall see what they say. My skin has been alot drier since the Gleevec, so I have been moisturising like crazy -- but who knows if it is the Gleevec 'causing this or just the sclero.

Sorry, I can't be more help. It's just this strep thing has skewed everything. Also, one thing to keep in mind, is that while on Gleevec you cannot take acetaminophen -- just ibuprofen.

Take care. I let you know how my Friday apptmt goes. Regards, Gidget.

#19 oddone

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Posted 29 April 2008 - 05:07 AM

Gidget -
My husband was screened yesterday for the Gleevec study here in London.
I specifically asked about the usage of acetaminophen/paracetamol, as he seems to use it at lease once a day.


They said that they were not aware of ant restrictions concerning acetaminophen/paracetamol. I was wondering if you found any literature about this.

Thank you -
Sorry to hear of your strep, hope t is sorted out quickly!! :)
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)