CancerCompass message board discussion started by Bruce p. on 2/14/2007 http://www.cancercompass.com/message-board/message/all,9604,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am making a documentary film about MDS (Myelodysplastic Syndromes) for newly diagnosed patients. I would like to hear from MDS patients and caregivers who have been living with the disease.  What do you think the newly diagnosed patient needs to know?  What information is important to know?  How did you cope?  What advice would you give to a newly diagnosed MDS patient? Bruce p. Wed, 14 Feb 2007 00:00:00 GMT Hi there! I think it is fabulous that you are doing a documentary about MDS. My father was finally and officially diagnosed in June 2007.  My Dad started getting weaker and weaker, very winded, and his color just didn't look right, so I convinced him to go to the hospital. They admitted him to ICU after his CBC showed his HG to be 4.6 and his WBC 1.2. After 7 days in the hospital his doctor discharged him putting him on synthroid and a heart med, and stated Did I mention Dad does not have insurance. Apparently, the doctor decided that he would get an onogologist to go see Dad at his GP clinic since Dad did not have health insurance. I guess he figured the charitable hospital was not adequate.  (Since I havd been "living" at the hospital for 9 months due to my brother in law, Steven, who was a quadreplegic having complications, I had gotten to know the staff very well. Steven had been put on the overflow section of the Onocology floor several times and i got very close with the nurse manager.)  Well I was furious after dad was discharged and the nurses came by to check on me. Thankfully, the nurse manager discussed Dad with a visiting Onocologist and he saw Dad the next day.Long story I know, put my point is that MDS is not very well known of even by doctors. i have research blood disorders/cancers for months now and it is hard to find info about it.Dad was diagnosed with the WHO score of RAEB-1. I am not completly certain what all that means...  such as the difference of RAEB-2? What will his quality of life be?, How high of a risk does he have of it becoming AML?    I search and search and still no answers.Does anybody know these answers or have a good site I can visit?  daughterofkgb Tue, 17 Jul 2007 00:00:00 GMT Hey Bruce,  I have just been diagnosed with MDS and am really interested in what your documentary is all about.  I hope people have been forwarding you with info for your project.  All I know now is that it is rare and my type doesnt even fit the 7 most common so I am unclassified.  My hemocrit gets down very low  (to 10-13) and i have been needing blood almost every week. We are going to try Cyclosporin to reduce white cells to help the red produce more.   Doctors want to do bone marrow transplant but I think it is too early for that drastic of measures.   Anyone have any luck with long term treatments?  I am 56 years old.  Young for this problem according to doctors.Any advise would be greatly appreciated.   thanks.     wayne1950 Sat, 15 Sep 2007 00:00:00 GMT Dear Wayne,Your younger age is a big PLUS when you need a transplant.  I hope everything goes well for you. If and when that happens, please give an update and in the meantime, our prayers are with you. Be strong! Transplants do cure people.  My mother, on the other hand is 64. The fibrosis is out of control and her survival rates are low.  The treatment for myelodysplasia is very close to my heart, please keep in touch. Andrea  JuJusdaughter Sun, 30 Mar 2008 00:00:00 GMT This is a very good group to contact for help with MDS.   They are great. Aplastic Anemia & MDS International Foundation, Inc. [email@aamds.org]They are trying to make these diseases better know and more research. Helene    HelenHi Sat, 26 Jul 2008 00:00:00 GMT Good Evening Daughter;I was just perusing and saw the posts and thought I'd stop by.I have MM, and I consider MDS its sister. The two are eerily similiar.The site below may help in your quest:http://www.vidaza.com/ This is the newest drug to treat this horrific disease.You might also wish to GOOGLE: Vidaza for some more sites.Take care;Kevin K. C. Sat, 26 Jul 2008 00:00:00 GMT