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Dasatanib Trial

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#1 the only Y

the only Y

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Posted 11 October 2009 - 07:35 AM

Hello all!

I am wondering if anyone out there is on the Scleroderma Dasatinib Safety Trial?

I started it about 3 months ago and just got back my first PFT and my diffusion capacity of my lungs has declined from 63% to 51%. (I am approaching the severe percentage for lung disease.) I am told that the other participants through Mayo Clinic-Arizona have had improvements. They are planning to do a CT of Chest to check lungs because I keep having issues with my R lung getting congested. This congestion is associated with pain in the R upper quadrant that radiates through to my stomach region and up to R shoulder. The MD thinks it could be something under my diaphragm because one of my liver enzymes is now elevated. The only thing I can say, is that I'm happy about the Chest CT because I don't think that the MD was convinced of my complaint until seeing the PFT result and he should know better because I am a registered nurse with Critical Care and ER experience.

Anyhow, I am here searching for HOPE and willing to do my part in helping to find a medication that will help us but am very interested in talking with others that my be in the trial. It is my understanding that there are about 30 of us out there. I hope your with this forum so we can connect.

Thanks Y :bye:
Searching for HOPE.......

#2 charliehorse


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Posted 14 October 2009 - 09:22 PM

Hey there, Y,

I think you're extremely brave to be participating in this study. It sounds quite stressful, though, with the changes you're noticing in your body. I hope the anxiety is not too much and that you make contact with others in the same research soon.

All the best, :flowers:

Life is better with Jeeves and Wooster

#3 janey


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Posted 15 October 2009 - 05:38 AM

Hello Y,
I haven't enrolled in the trial but I certainly am curious to see if it works. I see my pulmonologist in November and if my DLCO is continuing to drop, I'm going to talk about a change in medication. The Dasatinib Trial sounds like an interesting option. My DLCO was at 38% in August, down from 42 in January so it looks like my current meds (cellcept) have quit working. Cellcept did stablize it for a couple of years, but it looks like something has changed. It will be interesting to see if any of our forum members are in the trial and how it's going. I interpret the estimated enrollment of 30 as being the number of people they want to test. I can't find any indication of how many people have already qualified and are enrolled neither could I find any preliminary findings. It sure would be nice if this works!

please let us know what you decide and how your tests results come out.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 the only Y

the only Y

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Posted 15 October 2009 - 05:18 PM


Thanks to those that have responded. I understand that some of you are interested in the details of the study. It is my understanding that you have to have Moderate to Severe Lung Disease and have been diagnosed within the past 3 years. You are monitored very closely with CT's of chest, Echo's, EKG's and laboratory testings. At the beginning of the trial they biopsy an affected skin area and a non-affected skin area for comparison down the road. The Trial started as a 6 months safety study and has now been extended for 18 addt'l months. I guess they are liking what they see. You are given the medication Dasatanib 100mg taken daily, this is the chemo agent used for people diagnosed with Leukemia. Of course is a very extensive list of complications that are rather scary.

I had my Lung CT and it is showing that my fibrosis is stable, however I have a Pleural Effusion (possible side effect of Dasatanib) that they believe may be caused by Pleurisy (inflammation of the lung) related to my Scleroderma. I am not that sure. I have a CT of the Abdomen next week to check my liver, gallbladder and pancreas and after getting those results I will determine if I will continue in the study. The answer I have been given is Prednisone 10mg daily for several months and I just got off Prednisone after being on it for 1 year and I am very hesitant to go back on........I HATE that med.

Anyway, If you have anymore questions, I will be happy to try to answer them.

Wishing All my Comrades out there the very best.......let's take control of this dreaded disease.

Searching for HOPE.......