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the only Y

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About the only Y

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  1. Hello! 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. Y
  2. 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:
  3. Hello! I have had microscopic blood in my urine on/off for years with no reason. They also have done the testing that you mentioned and everything is normal. I know that it is frustrating. I now wonder if it could be related to Scleroderma??? Interesting thought and with the disease.......I wouldn't doubt it. Best Wishes to you. Y
  4. To All - Thanks for all the warm wishes.....I appreciate them and will keep you posted. :rolleyes: Yvonne
  5. Hi Ani! I have the systemic, possibly diffuse Scleroderma and my M.D.'s feel that @ this stage cyclophosphamide will be the best treatment for me. My Pulmonary Fibrosis is in the early stages, however I am on O2 due to dropping oxygen levels with activity and shortness of breath, which could be related to early Pulmonary Hypertension, they are not sure yet.... I will be getting the infusions once monthly for about 6 months. Thanks for your wishes, I will need them I am sure. Yvonne -
  6. Hello....I am going to be starting IV cyclophosphamide infusion's in January, I will be going on a monthly basis. I was wondering what types of side effects anyone has had and how long you felt bad for? Thanks - Yvonne
  7. Hi! Thanks to all for your responses and warm welcomes. I saw the surgeon today and am planning on having the biopsies in mid November. They don't believe that it is cancer, possibly Valley Fever or Sarcoidosis. Anyway, I will keep you all posted. Smiles - Yvonne
  8. Thanks for your input and good wishes. I was diagnosed withScleroderma, CREST in May 08 and have not had treatment yet due to these enlarged mediastinal lymph nodes. They treated me for several months with antifungals because they thought maybe I had Valley Fever. However I changed Pulmonologists because the one I had wasn't doing his job, I'm sure you can identify with that, anyhow, the new Pulm MD thinks that maybe I didn't have Valley Fever but was only exposed. He did some testing and discovered that my O2 desats to 83% w/exertion, so now I'm on O2. He is thinking that there may be some underlying Pulm Hypertension. So, that is where I stand, sometimes a little more then I think I can handle but hanging in there. I'll keep you posted. Y :blink:
  9. Hi! Thanks for the info. I don't have my biopsy scheduled yet, I go to the surgeon on Monday. There is some question about possible Valley Fever which I have read can cause enlarged mediastinal lymph nodes, so maybe that's what's going on. I was hoping just for inflammatory process because if it is Valley Fever than it will put of my treatment for Scleroderma until it's gone and that could be 1-2 years. Just continuing to do all the running around to specialists to get a hold of my health. I'll keep you posted. Y
  10. Hello! I am new to the forum, this is actually my first post.....I was wondering if anyone else has ever had enlarged lymph nodes in their chest related to scleroderma. I have had two chest CT's and they have not changed but they are everywhere. I am been sent to a Thoracic/Chest surgeon to have a biopsy to make sure that it is an inflammatory process. It would be a comfort to know that others have had this. Thanks :rolleyes:
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