Need help-newly diagnosed mom

[meidyn]

My mother was recently diagnosed after a month long stay at a hospital. She is currently on neupogen and aranesp and I'm not even sure of her counts but I know it is severe. She is currently living with me and does not have the energy to even take a shower or sit up in bed. Is this how it will always be? I can't understand how she can keep positive when she does not have energy to sit. Please help. I know she has many abnormalities in her blood and also 5-Q, they have not given us the "type" as she has so many abnormalities. I need to know what to expect at her next\first real visit. We are going to Shands in Florida. Thanks

[Dick S]

Shands is very good from what I hear. I have never been there, but a lady I know had a very serious L-type disease and Moffitt could not help here much, so she went to Shands and in short order they had here straightened out.
If your mom is over 65-70 she is probably not a candidate for a Bone Marrow or Stem Cell Transplant like me which is the only real cure, but she can hope for some relief and possible temperary remission with meds she is on. Somewhat unlike your mom, I can take a shower and get out of bed most days, but not much more than that on the bad days. Sounds like she has it worse than I, but try to keep her spirits up and encourage her to do as much as she can......never give up to this d*mn disease. I'll say prayers for her.

[meidyn]

Thanks for the information. She is 60 and we have our first real appointment at the MDS clinic tomorrow. I'm hoping they will giver her something that will at least give her some energy. I've never seen anyone go from active to helpless in such a short amount of time.

[Neil Cuadra]

One of the primary goals of your mother's treatment is to get her blood counts up and lessen the fatigue. Her quality of life depends on being able to do the things she wants to do. Let's hope Neupogen and Aranesp help boost her granulocyte (white) and red cell counts. Has she gotten many transfusions?

It may help you understand and track her progress if you know her blood counts from week to week and her MDS subtype or classification when it's determined. Many patients in the 5q- category are candidates for treatment with Revlimid. You might ask for copies of the results of your mother's bone marrow biopsies and ask her doctor (or Marrowforums members) for help in interpreting them.

If she has a positive attitude, that's great news. How we each react to news of a serious disease depends on our personalities and our outlooks on life, and I think a positive attitude helps tremendously.

I suggest that you write down questions you'd like to ask the doctor, and questions she'd like to ask the doctor, so you don't forget to ask them. Please let us know what happens.

[ann]

I am so sorry to hear that your Mom has MDS. My husband was disgnoses with it on 6/30/09. He is on Vidaza, Procrit and has gotten Neupogen after his WBC dropped. Today, his RBC & WBC were up but his platelet count was
down. It seems we take one step forward and two back but we can't give up and neither can you. Your Mom may be a candidate for a BMT but my husband is not, he is almost 73 and has other health problems on top of the MDS. We have wonderful doctors and a wonderful network of family, friends and church family No matter how good a network we have, we still have days that we are in a fog with this disease that we had never heard about before June. When we try to tell people what he has, they confuse it with MS. Since he is in a wheelchair some of the time, on bad days,they are really confused........... We sometimes are too.
Good luck and you will be in my prayers.
ann