Diagnosed 2 years ago

[Betty Richardson]

My 77 yr old husband has maintained rbc count of 10, with a few shots of Procrit. He is very tired and sleeps nearly all day. His doctor doesn’t react to anything we tell him, regarding how he feels. Just that as long as the RBCs are above ten, he’s fine. But, he doesn’t do anything at all…,just stays on the sofa. Can anyone help me understand what’s happening?

[Tom Nelson]

I’m 76 coming up to 77. Diagnosed DeL5q 3 years ago. Now on Aranesp once or twice a month keeping RBC above 9. No transfusions yet All other tests in order. Sleep well at night and 1-1/2 hour nap mid day. Have learned to keep busy when possible. Chair and couch too handy. Do every thing in 10-15 minute spurts, then rest. Have other heart and cancer issues, but under control. With the virus, I would like to take walks, but afraid if I go around the block, I’ll be 1/2 way and too tired to return. Maybe a physical/lecture would help from his IM doctor with an emphasis on exercise or Re-hab/PT. My oncologist defers all other non-MDS DEL5q issues
to my IM.

[Betty Richardson]

Thank you, Tom. I think depression has caused some of the fatigue, too, but his GP doesn’t address it. I’ll try again!! Stay well!

[justa0]

Was your husband diagnosed with anything else besides anemia 2 years ago and are his other blood values tested like WBC, Hgb?

[Susan Paolilli]

I am 73. I was diagnosed 1 year ago when the blood work showed abnormal blood cells and neutropenia. I have had no previous chemotherapy or radiation. My hematologist and two other doctors offered no treatment options and I was told to come back in 6 months for another blood test. I resarched and started on an herbal protocol and acupuncture when I discovered that the diagnosis was MDS. I don’t know what triggers the blood precursers to change but I believe that it is related to old age and the health of the immune system. I believe I caught my condition early because my protocol has normalized my neutropenia. My HCT an HG is in normal range for now and there are no abnormal blood cells. I hope my experience will give some hope to others with MDS.

[Betty Richardson]

Thanks so much for responding. My husband has mild COPD and has had several skin cancer surgeries. Just had another 3 weeks ago. All were on his face, ears and hands. Parotid gland removal due to squamous cell metastasis which resulted in facial paralysis.

[justa0]

What is your husband’s hemoglobin number?

[Betty Richardson]

Last week it was 10.9, so no shot of Procrit. Thanks so much for responding.

[justa0]

If your doctor does not respond to your questions about why your husband is so tired, then I would get a second doctors opinion. I also have anemia. My hemoglobin and red blood counts are very low and it makes me very tired.

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