[slrb2152]

Hello to Ruth and Birgitta,

First, thank you both so much for your replies. I am hoping others will also reply with their experiences.

As for details of Mother's condition, I don't know much. I did get a copy of the biopsy report but as I mentioned, it seems somewhat less detailed than others have described. I also got a copy of her last bloodwork.

She is anemic and has been very weak and fatigued for quite a while. That is what prompted repeat visits to the internist. He at first kept thinking it was her thyroid since she has had a difficult time getting/keeping it regulated in the past. But, after several unsuccessful adjustments and repeated bloodwork, the downward trend of her RBC etc. was noted. The CBC showed the following abnormal values. I haven't had time to look them all up yet but will. I don't see any mention of EPO or anything that I think would represent it on the copy of the results. Is there something here that is what you are referring to? Is that a separate test?

WBC 2.8 (3.5-11)
RBC 2.72 (3.70-5.10)
Hemo 9.4 (11.4-15)
Hema 27.5 (33.0-45)
MCV 101.2 (80-98)
MCH 34.6 (26.0-34.0)
Monocytes 14.9 (0-12)

The doctor indicated he would start her at this lose dose then increase it if she does not respond. He is not one to give explainations so we don't know why he is doing it that way. (She has taken Aranesp before, following the chemo when red counts went down. She has never been transfused.) He also commented her white count was low but did not feel it was low enough to require treatment at this time. (??)

I am still trying to lookup words from the biopsy but don't see reference to EPO levels.

Mother, even at 79, has been very active. She and my Father totally care for themselves and want to be independent even though I live nearby. During all the chemo and worst times, I have done the housework, grocery shopping etc but basically she/they have managed themselves at their insistence. In recent weeks, she has become less able to do the normal things due to tiredness and general weakness. The tired/weak feelings seem to come and go and change in their severity. Is this typical? One day, she feels fairly well, the next awful and even from one hour to the next it can change. Just wondered if this is a normal pattern for MDS.

I really appreciate your responses and please let me know of other things to look up or to ask the Drs about. I have a notebook I started when she began the lymphoma treatment. I keep notes in it so I can remember to ask the Dr various things and then record what he says so I can look it up. I will inquire about the scheduling of the shots. If there are other things I should ask, please do let me know.

Thanks for the link, I will definitely look it up.