Does physical activity make MDS worse?

[junglegirlsue]

My Mom is 76 and was diagnosed with MDS six weeks ago. She went in for a heart stint and was so anemic they had to do a transfusion before doing the stint. She left the hospital at 10 for hemoglobin(?). She is low in red blood cells but ok on the lother levels. I think that is the test. Two weeks later she droped to 8.1 so they gave her a shot of aranesp with no transfusion. Seven days later she was up to 8.8. Four days after that she was up to 9.2. Two days later she droped to 8.1 so they gave a second dose of Aranesp.

Does anyone know what the key is to going up and down on Aranesp? Is there a corelation between physical exertion and your numbers going down? or diet? The doctor said that the drop from 9.2 to 8.1 in four days may have been due to sugar. She ate a couple of bags of left over easter candy. Can anyone confirm that with experience?

Also I am arguing with her that she needs to not do so much and maybe her numbers will build. Is that true. My Mom is very active, she heads the bridge group at the senior center. So she doesn't sit around. I live with her with my 3 year old too. She usually did all the house work. I keep telling her to let me do it and conserve her energy. She won't believe that stuff like that effects her numbers. Who is right? She thinks that as long as she can sit and catch her breath between activities she is ok.

Tonight she was lifting 30 pound bags of fertilizer and fertilizing the lawn while I argued with her that she couldn't do that anymore and we needed to hire it done. Does it hurt? How much should you do or not do and does it effect the numbers? I would appreciate any feed back.

[Birgitta-A]

Hi junglegirlsue,
Unfortunately I don´t know much about Aranesp - hopefully somone else can answer that question.

Regarding exercise and MDS (and other blood cancers) I have understood that exercise is supposed to be good but lifting 30 pounds bags is perhaps too much for a woman that have had a heart stint 6 weeks ago.

http://www.cancerwise.org/june_2001/...ull&color=blue
Kind regards
Birgitta-A
69 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days with transfusion, Neupogen 2 injections/week

[Joan]

Hi Junglegirlissue;

My husband has had MDS-RCMD for two years. He was getting aranesp every two weeks then for insurance reasons had to be switched to epogen/procrit. His hgb fluctuated but he was usually going 4-6 weeks between labs. Earlier this wpring his hgb was down to 8.7. Last lab it was 9.7.

As to exercise, doctor has always told him to do as much as he felt like. We just returned from a 3 1/2 miles walk. We did sit down for 5 minutes half-way through. I would say let your mother do what she wants but I agree wtih Bridgett that lifting 30 lbs. might be too much.

Good luck.

Joan

[katherineann59]

Hi Junglegirlsue,
I am 48, so your mom has a few years on me, but I was diagnosed with MDS Intermediate 2 a year and a half ago. My doc has encouraged me to continue being as active as I can. I am pretty in tune with my body, so I don't push myself if I'm not feeling up to a workout, but I do try and maintain a fairly consistent exercise routine. I know for me, I feel so much better when I get my body moving - even if it means doing less than I would have liked. Hopefully your mom is listening to her body and limiting herself when she needs to. Without my exercise routine, I don't know how I would be getting through the rigours of the treatments for this disease. Good luck to you and your mom and try not to worry about her too much.
Kathy