organ infiltration in CMML

[jonelle]

Thank you everyone for contributing to this Forum. I come back to it constantly for information & solace.
I am curious if anyone has experience with infiltration of leukemic cells into internal organs. Even before diagnosis my husband, Jack, has had an abnormally large “gut” despite his athletic nature & attention to diet & staying slim. Dr suspects leukemia has spread into his organs…spleen, stomach, & kidneys(creatinine is 2.7 -up from 1 since diagnosis).
Any insight would be greatly appreciated!

[CarolineG]

Jonelle.

I don’t know what ‘infiltration of leukemic cells into internal organs’ means. But…my Dad 81, has CMML and he has chronic kidney failure. The doctors think that they go hand in hand. Dad’s creatinine normally stays at around the 300 mark now. It has been as high as 650 but it came back down after we began giving him Aranesp shots. He nearly had to start Dialysis but when it dropped the Nephrologist decided that it was not necessary. It never goes below the high 200’s anymore.

I hope this helps you.

Blessings,
Caroline

[Bkwits]

Jonelle,

My husband had CMML and suffered acute kidney failure five days after starting Vidaza. His hemo doc said they made a mistake in starting Joe on Vidaza because his creatanine was high before starting Vidaza. Joe had dialysis about twice a week. I don’t know how the high creatanine relates to CMML.
Barb

[Jack_dup1]

Jonelle,
I have enlarged spleen, but creatanine is always in normal range, I do have high Lactate Dehydrogenas (510) and take allopurinol to keep Uric acid normal
Jack

[Jimbob]

Jonelle,
During the first fear after I was dx’d, I did have severe pancreatitis (SP), enlarged spleen and gall bladder problems. I had to have my gall bladder removed after the first round of chemo and radiation and then go through it all again before SCT. Now, more than 3 years after SCT, I definitely have acquired a big gut but no one has attributed to anything other than that I eat too much for the little activity I do.
Jim

[patti]

Jim,

Oh! I’ve never “met” anyone else who has had pancreatitis. Nice to “meet” you. Hee. I got that when I was 13 weeks pregnant with my last baby. I don’t think I’ve ever had such awful pain. Have you ever had trouble with your pancreas since? Do you have sugar trouble? Mine caused so much damage to my pancreas I really have to watch my blood sugar even though I’m not technically diabetic. Was just curious about your experience.

patti

[CarolineG]

Barb.

There is a reason why the kidneys can also be compromised when a person has CMML. Erythropoietin…… (A hormone that stimulates peripheral stem cells in the bone marrow to produce red blood cells)…… is manufactured in the Nephrons….which are little ‘factories’ located in the kidneys. If the nephrons are not working properly, then the red blood cells will not be made properly . My Dad sees an Oncologist/Hemotologist and a Nephrologist. The Nephrologist is a Kidney Doctor who specializes in the Nephrons. Dad’s disease is called Glomerular Nephritis I believe. I would have to check. But, both doctors have explained to me that CMML and Kidney Disease can go hand in hand. Creatinine levels in the blood rise when the kidneys are not working properly to filter the blood of impurities. In Dad’s case, he only has 24% kidney function. He is slowly going senile now. It isn’t from old age dementia though. Dad’s blood has so much poison in it that it has affected his brain. We can always tell when his kidneys are working a bit better…usually a couple of days after I give him an Aranesp shot. His mind is clearer and he is a little bit active. It is never long lived anymore though. Only a few days…if that. Then he gets very confused and spends most of his time sleeping. The only medication that they have given him for his kidneys is Sodium Bicarbonate Tablets. I don’t know exactly what they do but I plan to ask the doctor next Monday when I take Dad to see him.

Caroline

[Bkwits]

Caroline,
Thanks for the information. I think the Vidaza accelerated the kidney failure. In other words, it would have happened but not so quickly. When Joe chose to have Vidaza, he didn’t have many options left since his platelets were so low (less than 10 at times) and he was resistant to plt txs and other treatments to raise them. May God bless and spare your Dad more suffering and discomfort.
Barb

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