What are the most important questions to ask my hematologist
November 16, 2006 at 7:54 pm #15950chuckk333Member
I have gone to 2 centers of excellence. One did another BMB and the other just asked for the slides from the previous ones.
ChuckNovember 16, 2006 at 8:13 pm #15951jga_socalMember
You can get tons of free material on stem cell transplants from marrow.org. The direct URL is really long so here is a shortcut: http://tinyurl.com/ycanwq
Order a copy of EVERYTHNG from this page. Its all free! In the material they send you, you will find tons of questions to ask your doctor. The question about when to go for the transplant is a delicate one. One thing seems to be true: the healthier you are going into it, the better chances you have of surviving it. If you wait until your mds transforms to AML,CML, etc, your odds get worse. Also, early on, like now, you can get a little picky about donor matches. If your siblings dont match then a search will be made of the nmdp (national marrow donor program) database. You can consider holding out for an ‘exact’ match of 10. If you are relatively health, young, and have an exact donor match, I would think you’d have considerably better chances than the published average, which includes sicker and older people.
I had a second opinion on my bone marrow biopsy. The second opinion was at City of Hope National Hospital in Duarte, California. It is one of the top 3 transplant centers in the country (in terms of 1 year survival rates). They had me send my original biopsy slides to them from my primary hospital. No new biopsy required.
I’m sorry to hear about your recent diagnosis. Mine was in January. Being thrust into this new reality is quite an initial shock. But eventually you’ll realize that your new life with mds will make you a stronger, deeper, and more compassionate person. Millions of of people without terminal diseases live with the knowledge that their statistical odds of 1-4 year survival is only 50%. These are the most prized people in our society, the elderly. My father is 86. He has no terminal diseases but he knows that his time left is statistically just around the corner. Yet he is a very happy man. So, now I need to adopt his outlook on life.
JimDecember 3, 2006 at 5:36 am #15952faith’s daughterMember
First let me say how thankful I am to have found this site. My mother was diagnosed the day before Thanksgiving. She had been in the hospital for a week and we were both quite weary. The questions didn’t come until later and with your help I’ll be sure to ask some good ones. She’s 67 but that’s the only number I know. Her primary care doctor is helping us find a specialist in her insurance group and apparently the hospital kept the lab reports which now I realize I should’ve been given. I’m confused about masks and just how careful she has to be. She doesn’t want to take unnecessary risks but wants to continue living a full life. She is living with me as I’m concerned about mold exposure in her home (bad roof) and she’s usually here for the holidays anyway.December 3, 2006 at 7:16 pm #15953J.claireMember
Dear Faith’s Daughter, I share your thankfulness for this forum. I used all the suggestions, plus some ideas I got from searching the archives to help me with my list of questions. It made a huge difference for me when I went for the second opinion. I now am scheduled for a second bone marrow biopsy and some more blood work. I sometimes think this whole MDS thing can be almost harder on the caregivers or the supportive family members than anyone. I know my husband takes it much harder when the cbc levels keep dropping, etc… Your mom is lucky to have you to help her navigate the whole medical jungle. Keep us updated, and all the best to you and your mom.December 3, 2006 at 9:04 pm #15954JimbobMember
Jim, just above your posting, made a reference to City of Hope in Duarte. That it pretty close to you. I is where my doc has suggested I go if I needed transfusions or any help while in the LA area. Soory you had to seek out a forum like this but it is good that you found this one.
JimDecember 5, 2006 at 8:25 pm #15955faith’s daughterMember
Thanks for pointing that out Jim. The hospital Mom was in usually uses UCI but in her case the slides were sent to City of Hope. I can at least take comfort in knowing the slides went to a top-notch place.
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