Terry Ann Sims's Page

« Hi Guys, My name is Terry (female) I'm sitting in my hospital bed think I need more information on ECD and I have just read an article on (Larry)wrote an article 3 years ago and it sounds like me I, There doesn't seem to be any in Australia to talk It's been very frustrating to find any group that has this condition as I..... 1. Find out more about it and speak or text anyone how has been thru it 2. Be able to help people go thru what I had gone through J pains 4 months of pain and not knowing what it was I have some much to give and learn about these condition I live in the gold cost Australia and 2015 wasn't a good year I had a tumour in my stomach that was 8x4 inch which I had biopsied my stomach was going at a great rate it got to 150 cm around my waist went to 150 cm round and I had a small waist of 85cm l felt Like I was at least 8 month pregnant. I was in in out of hospital November and December 2015 being home for only maybe about 3 weeks. I was admitted to Gold Coast hospital from 28th Dec 2015 then transferred to Princess Alexander at Brisbane about 3 week of March they told me I had Langerhans cell histiocytosis as well Erdheim Chester disease. The news was overwhelming as they through I had Sarcoidosis which in 2010 I had nodes in my lungs. I left the hospital 30th Mar, I went thru chemo for 15 weeks and it didn't work so my haematology Dr Gregg Seeley at gold cost hospital along with the immunologist team at P.A Dr Wong and Dr Hogan put me on Vemurafenib (zelboraf) which I have been on since sept 8th 2016. I was admitted with extreme pain all over my body but is bone pain, light bulb moment so I went looking thru my diary and I release that it's the tablets I'm taking. All I'm looking for support group, I am positive to the braf mutation cell. On Larry has Erdheim Chester disease site he talks about the tablet "Glivec". I Only work out I have a reaction to zelboraf today so it early days yet but if you known of some one or support groups please let me know as I'm really interested in it an what I can do Regard Terry »

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