She was just diagnosed last week, but I am sure she has had this for a few years. Don't know stage or type. Plan to go see her next month and talk to her doctor, currently getting info from my neice (she and I both have power of attorney--she lives there).

Poshshorty, wanted to ask you, after they discontinued the blood transfusions, was your dad in more or less pain than before they stopped, or did he progressively just get weaker? I am concerned about what my mom might be facing prior to the end. (Hope this is not too insensitive). Am taking the grandchildren away for a long weekend, try to get away from it all-----(2 counsins w/lung cancer, my mom, and last night I discover that her sister may have cancer--and someone told my mom!!!!!}-.= Talk to you again. first of the week, God Bless,
Pat

Pat, I'm so sorry to hear about your Mom's diagnosis. My dad was diagnosed in 2007, but they think he's had it since 2004. We have been very lucky that his did not develop into AL. He has an amazing Dr. here in Dallas and my family credits him and my father's will to live for him still being here today. He has been through 2 types of chemo and is now transfusion dependent. He goes in every 2-3 weeks for blood.
Welcome to the group.
Julie

David was diagnosed a year ago with high intermediate or high mds. He did not want to do chemo. He was 85. He had 23 transfusions with 2 units at each. They kept him on his feet until June. Suddenly they made no difference. On June 3 he is at peace.

Pat Dad had really no pain until the Saturday before he died on Tuesday. then he complained of shoulder pain which now I think was his heart. the dr always asked about chest pain since that is one of the things that can happen. on Tuesday he talked to me and was happy. an hour and a half later he was having trouble breathing and very very weak and died within minutes. He grew very weak over the course of the year we knew he had it. not insensitive at all hon. I continue to stay here so I might can help others. ask anything you want or need to hon.

Mary hon I am so sorry to hear your news of David. love and peace to you hon.

Maryabell, sorry to hear about David. God bless you with his Peace.
Thanks to each of you for your comments--they are very much appreciated. I am just returning home after 4 days visit to my daughter in Atlanta, much fun with a total of 6 grandchildren (ages 11-20).
Poshshorty--thank you for your reply about your dad's final days, it helps so much-- plan to go to Missouri next month and spend time with my mom, if not sooner--her plateletes were at 23--they gave her 2 units of platelets, a week later her plateles are at 27--they are going to test her again Wednesday, Godbless you all, Pat

Julie,
Thanks for your update on your dad--what age is your dad? How long
has he been transfusion dependent? My mom is 85, and that is all they offered her, due to her other illnesses.
Thanks,
Pat

hi Pat. they would never transfuse Dad until his plts were down into the low teens! wow! that is great they are doing that.

My mother went to the Dr. yesterday,her numbers where the same as last week, so no transfusion this week. She is having trouble grasping words, the Dr. told her she is not getting enough oxygen to the brain.
Poshshorty, I believe they are monitoing her so closely due to her being diabetic.

Pat, Dad is 79 years old. He has been transfusion dependent around 2 years. He also has several other illnesses/conditions along with his MDS. He goes in almost every 2 weeks for blood, but has recently been taking Procrit shots that are suppose to help keep his RBC count up. He did go twice for 3 weeks in between transfusions, but then got cellulitis this summer and was back to every 2 weeks. He's finally getting over the infection and starting to feel better this week. Hoping he might go back to every 3 weeks between transfusions. He goes in every 2 weeks for blood work. His blood transfusions are based on his RBC count.
Since spring he has started having some memory issues and gets confused about certain things. He has days that are better than others with his memory. I'm sure it has to do with lack of oxygen as well. My mom and I discuss it often and assume it relates to low counts, lack of oxygen, and the fatigue.
He is having a really good week and made church Sunday and rotary Tuesday. Hoping this continues for awhile :)
Julie

Pat Dad had an issue with his memory and comprehension as well. even the oxygen didn't seem to help that too much. maybe she needs full time O2 just in case. you would need to find out her stats though. insurance won't pay for it if it is above a certain number. good luck hon.

Hi Julie, and Posh,
Thank you both for your replies. Glad your dad is having a good week, Julie. I plan to talk with my mom's doctors while I am there next month and maybe get a better feel for where she is.

My mom had another transfusion yesterday(3 weeks since last one)--both blood and plateletes were low, so they started her on Aranesp shots to be given every 3 weeks to try to up the RBC. Has anyone had experience with this medication? Side effects, etc? Thanks to all of you for your input, God bless, Pat

my dad had them for about a year before they stopped working. they worked well though. no side affects for him.