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About to start Gleevec trial


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#1 Yaya

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Posted 01 May 2008 - 01:22 PM

I am new to this. I am about to start the Gleevec trial for my scleroderma and what reading some people's experiences with it. This is a very scary experience and wanted to see if any one had any advice to offer.

yaya

#2 Sweet

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Posted 01 May 2008 - 03:02 PM

Hi Yaya,

Welcome to the Sclero Forums. I'm so glad you've joined us! I'm excited for you with your upcoming trial. I have not participated in it, but I do believe there are a few here that have, so hopefully they will chime in and help you through this.

Again, welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 omaeva

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Posted 01 May 2008 - 04:10 PM

I haven't done it either, I just wanted to welcome you to the site!

#4 jefa

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Posted 01 May 2008 - 10:15 PM

Hello Yaha and welcome to the Forums. I have no personal experience with the Gleevec trials but as Sweet has mentioned, we have several members who have or are still involved.

Here is a recent topic on the subject: Gleevec trials topic

If you are looking for other discussions in the forum, it is easy to use the Search Forum button in the purple toolbar above. This is what I did and why the word Gleevec is showing in yellow. If you do it for yourself, you will find all the topics which mention Gleevec. Good luck.
Warm wishes,
Jefa

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#5 Karenlee

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Posted 02 May 2008 - 01:30 AM

Welcome Yaya.

Like the others said, I have not had experience with the Gleevic trial, but some here have and I'm sure they will answer your questions.

Good luck with the trial. Keep us all posted as to how you are doing.

Karen

#6 janey

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Posted 02 May 2008 - 04:57 AM

Yaya,
Welcome Darlin'! We've had several members do various trials and I think all were nervous, but yet excited at first. One of our support specialist just can't stay away from them. I think she's doing her fourth trial at the moment. So it's natural to be nervous. Just know that your willingness to participate takes a lot of personal strength which you obvious have since you did sign up for it. It's that personal strength that will help you make it through the trial and through the road bumps caused by this disease.

We do have a small section on the Gleevec clinical trials if you'd like to read about them. Just click on the link.

Look forward to hearing about your experience.

Big Hugs,


Janey Willis
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#7 Snowbird

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Posted 02 May 2008 - 09:47 AM

Hi Yaya

I don't have any experience with that either but I also wanted to say how nice it is that you joined us. I'm certain someone here will have some information for you along the way. I also think you are doing a very good thing with the trial, both for yourself and to help others with this disease in research they might discover. :)
Sending good wishes your way!

#8 aniwallar

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Posted 02 May 2008 - 12:54 PM

Hi Yaya:

What made you decide to participate in that trial? What made you a candidate for it? I just saw my doctor and he mention the trial and he felt somewhat excited about this medication. I just know nothing about it. Could you elavorate?

Thanks,

Ani

#9 Gidget

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Posted 04 May 2008 - 12:19 PM

Yaya,
I am in a Gleevec trial. I have been on it one month and my biggest complaint has been the nauseusness. I also developed a small rash that went away; dryer than normal skin which I now use lots of moisturizer for; tiredness; and increase in acid reflux and some water retention. All of these things are manageable. I switched from taking the drug in the morning to after my dinner in order to decrease the nausea. And you are suppose to drink a full glass of water with the drug. For me the hardest part is taking the drug and then running around afterward as I feel somewhat drained. So, I do best when I can take the pills and have nothing planned to do afterward. Good Luck Gidget

#10 Lucy

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Posted 12 May 2008 - 02:48 PM

Hi Ladies,
Unfortunately for me I was one of the ones who had an adverse reaction to the Gleevec. I just got out of the hospital and I am very weak. On the seventh day of taking the drug I lost most of my muscle control, my blood pressure dropped to 54 over 40 and my temp was 102/103. When I got to emerg they got me stable but it took 6 intense hours and a lot of drugs and a week in the hospital. I felt like the drug was starting to do a little good before I woke up the next morning with the above symptoms so I am sad at being taken out of the program.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#11 Gidget

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Posted 13 May 2008 - 03:47 AM

Lucy,
I am soo sorry that you had the reaction to Gleevec. It truly does stink as there are not alot of drug options available--especially as this one is being touted as the most specific to sclero. I am on my second month and have had good days and bad days. During my first month, I had a hard time getting up and around -- could have slept all day. It turned out I had strep but by the time I figured that out, it was pretty well in my system and took 2 sets of antibiotics to get rid of it and a good solid 3 weeks. For me I was happy that at least there was a cause to my inability to move as I thought it was the Gleevec and that there would be no way to stay on it. I've switched to taking the drug at night and today my biggest complaint are the dull headaches. My local rheumatologist said he would be surprised if I did NOT have any side effects. It is good you decided to participate in the trial as at least you don't have to wonder how it might have worked. What has your local doctor suggested that you take for the sclero? Regards, Gidget

#12 Lucy

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Posted 22 May 2008 - 04:05 PM

Hi Gidget,
Have you noticed any improvements or changes yet? You have been on almost two months? Have the doctors in NYC given you any indication that they are pleased with what this drug is doing for scleroderma? As I told you earlier, I took an adverse reaction - so I have been off now for two and a half weeks so my doctor is suggesting I go back on the Gleevac at a lower dose 1 pill a day and they will build me back up. I am scared stiff. I just do not know what to do. Anyone, anyone have any thoughts?
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#13 Lucy

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Posted 22 May 2008 - 04:07 PM

Hi Yaya,
How are you doing on the Gleevac? Any positive changes yet? Any problems. My doctor is suggesting I go back on but at a lower dose, I am just so nervous.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#14 Gidget

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Posted 23 May 2008 - 01:49 PM

Lucy,
Yep, I've been on it for 2 months or so. I am having a little bit of a problem with the 400mg (4 pills) as it makes me nauseus and knocks me out. So, I try taking the dosage at dinner thinking I will sleep through the side effects. And the side effects don't bother me at night, however, the Gleevec turns me into an insominiac. So basically, I can make it until about 2PM in the day and then I am wiped out for the rest of the day. The doctors at NYC are willing to reduce my dosage down to 2 pills a day. On 2 pills (200 mg), I don't have any problems at all and I don't peter out by 2. However, I read on the leukemia forum that anything less than 300 mg a day is ineffective -- mind you this is for leukemia. So, right now, I am trying the 300 mg and seeing if that makes a difference to the energy level as I really don't want to go down to 200mg if the drug does actually work. I mean, this is the only time we are going to get this drug is with this clinical trial.

I did see your post and thought some of my problem might be low blood pressure but it seems to be normal 2 out of 3 times. The other time it runs 90/50. I also called NYC to see if my blood work showed any anemia or something like that which would cause low energy and fatigue - answer was no. I then thought it was because I really wasn't exercising as much as I have in the past because I was so tired. So, I tried exercising more, to see if that made a difference, and on the 400 mg, I was still the same-no energy. I am going to start watching my blood work as I know how my white cells reacted while on cyclophosphamide. If the Gleevec makes the white cells react the same way ie. go down; then I am going to assume the drug is working as that was the purpose of the cyclophosphamide -- to drive the white count down.

So, like I said, 200 mg is great. Feel fine. On 400 mg (4 pills), I am dragging and irritable. Who knows, I may have to just give into the 200mg. As NYC says, they have no idea how this drug works for sclero and what works for the leukemia patients might be too much for the sclero patients to handle -- so I can drop down to 200 mg to be comfortable. They also said to not expect any changes for 6 months. So with this in mind, sometimes I think it is doing something; and other days I think I am still the same.

Good Luck. Gidget



#15 Gidget

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Posted 23 May 2008 - 01:52 PM

Lucy,
You have a tough decision as far as to go back on it or not. Good luck with your decision. Regards, Gidget

#16 Lucy

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Posted 27 May 2008 - 03:11 PM

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

#17 Gidget

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Posted 28 May 2008 - 06:25 AM

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

#18 Bird Lady

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Posted 28 May 2008 - 11:31 AM

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)

#19 Gidget

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Posted 29 May 2008 - 03:37 AM

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

#20 Lucy

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Posted 29 May 2008 - 05:50 AM

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