Monday, February 14, 2011

Why do I still feel bad, if my numbers are good?

Almost from the beginning, Bob began to respond well to the Chemo (Velcade/Dex). Of course, he was so ill and so near death, I think he had nowhere to go but up! His MM was very aggressive, and had gotten a  hold on his body, before it was diagnosed. Like many MM patients, he had no lesions, in his bones, but his kidneys had begun to be affected. His lab work, and his M-Spike, showed positive response after treatment was started. .......But, he still felt so bad, so weak, so fatigued, so "not like doing anything", and I worried, but I kept smiling....and trying to assure him that the drugs were making him feel like crap.

Monoclonal Protein (M-Spike) is a type of protein made in large amounts by malignant plasma cells and secreted into the blood. His M-Spike (cancer count) was at almost 6.0 and he had 21% plasma cells. After 4 cycles of chemo, his M-Spike was at 0.19 and there were only 3.3% plasma cells. This was remarkable!

Per a pamphlet distributed by The Leukemia and Lymphoma Society, the myeloma can stop making an M protein, and based on lab tests (blood tests) the condition can appear to be improving, but the myeloma is actually progressing, and the patient feels worse. Was this happening to my honey?

Beta-2 Microglobulins is a cell protein found in the blood. A high level may be a sign of faster-growing disease. Bob's Beta-2 Microglobulins should be decreasing, but was continuing to increase.  On 10/26/10, it was 2.60 and now, on 2/8/11 it is 2.82. (The acceptable range is .70 - 1.80.) Is this an indication that things aren't as good as they seem?

I reviewed UT Southwestern's "My Chart" (the online test results available to patients and caregivers) and decided to send an email to the MM Specialist. He replied that Bob's symptoms probably had nothing to do with the Myeloma, but were a result of the Velcade, (which is what our oncologist at home has been saying). Even though he hasn't had a Chemo treatment in one month, it will take a couple of months for his system to recover from the after-effects.

The Specialist at UT Southwestern felt that his Beta-2 Microglobulin is elevated because his kidney functions aren't normal, which means that his kidneys will have to be flushed, a couple of days, after the high dose of Melphalan and before the SCT.

We are sill awaiting results of the Bone Marrow Aspiration and Biopsy to get a true picture of what's going on. He still doesn't feel good - no temperature, but says he feels like he "has the flu". Could it be Mono? The Epstein-Barr (Mono) numbers are up, a little, probably because of the stress his system is undergoing.

Why does he feel so bad?  I don't know, but I do wish that I did.....would make my "job" easier!!!

Please continue to send prayers our way!!

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