cmml question for jack, et al

[greg]

Does anyone have any experience with these damn monocytes infiltration the lungs or any organs other than the spleen? Also, anyone with a connection between the cmml and arthritis?
thanks, greg J

[Jack_dup1]

Hi Greg, Sorry I can’t answer your question, but if it helps, it gives me something else to worry about, just kidding. My monocytes have gone up and down for 3 years, they have mentioned enlarged kidney and spleen, not that I have them, but it could happen. The problem is that as soon as they find out about the CMML, they blame it for everything. I just came from the eurologist for Testicular pain, he blamed it on CMML, I went to the ear Doc for ringing in the ear, he didn’t even examine them, just said it was the CMML. I have a lot of Arthritic pain but I have not associated it with the CMML, if I go the the Arthritis Doc, he probably will. You caught me on a negative day. The short of it is I have questions but no answers.
Jack

[Zan LI]

Greg, My mother progressed from CMML to AML-M5 last year. And the blasts may probably infiltrate into her brain and other organs as well.

[Jimbob]

My regular doctor was a vet before becoming an osteopathic physician. He had many years seeing similarities in how various diseases that affect humans had displayed symptoms in animals.
Interrestingly, many of us are unable to voice all of the things that are happening to us almost like the animals he had treated. My doc sometimes seems like a mind reader. He knows what is happening and how I feel even if I don’t tell him.
I know that ‘m not going to say this quite right but, he said something like the damaged blood cells seem to accumulate additional damage to any weakened area. MDS is a malignantcy of the blood. The blood still goes everywhere throughtout the body and it affects wherever it goes to some degree or another. It is like tumorous forms of cancer metasicizing to other parts of the bocy. He explained to me that MDS and the various blood diseases often display their presence in symptoms elsewhere, especially if there had been previous injury or damage by other disease. I, for example, had some peripial nerve damage before and it was aggravated by CMML to the degree that it may take years, if ever, to get over. Also, and this is especially for Jack, I had a testicular injury about 35 years ago and just before I went from CMML to AML I had extreme pain there along with softball-sized sudden swelling. A sudden flair-up could be notice that a transformation has taken or is about to take place. This is why we have to keep the doctors imformed of any changes.
Sorry if I have rambled. I seem to do so which is one of the reasons why I don’t post replies as often as I would like to, especially when overwhelmed by what I hear many of you are experiencing.

[JulesH]

Greg,

My arthritis has worsened considerably in the past 3 years.

I live in Florida and when temps are 60 – 90 degrees I feel great with no pain.

When temps are 40-60 degrees I suffer and can hardly walk.

I have to take Allopurinal for gout and Uric acid.

This week temps have been in the 60 – 80 degree
range so I have played golf each of the last four days.

JulesH

[greg]

Thanks for all that. My mother’s joints are swollen as all hell and they just found some cmml cells in her lungs. Her monocyte % has always been pretty high but she still has no blasts in marrow or bloodstream. Incomprehensible as I always thought blasts measured the disease. She starts Vidaza tomorrow to try to calm down the crazy monocytes. Any similiar experiences/treatments? thanks, greg j

[Harold]

Greg, how high is your Mother’s monocyte count? My monocyte count runs on the high side of normal and often above. I recently had a CT scan to check the size of my spleen. The scan showed a normal spleen but there was a “mass/nodule/consolidation/pneumonia/???” in one of my lungs and they are currently trying to determine what it might be. The doctors have said it might be “leukemia” cells. I’ve had CT scans and PET scans and I will have a bronchoscopy/biopsy in a few days. I don’t have any symptoms related to the lungs. I’ve been on Vidaza for a long time. I do have blasts in the marrow (10%) and occasionally there are a few blasts in the peripheral blood. How was your Mother’s lung involvement diagnosed? I have tolerated the Vidaza well and I hope the same for your Mother. Harold

[greg]

Dear Harold et al:
Her monocytes have always run well above normal, but bm blasts are still normal 2.5 years after diagnosis. The monocytes in the lung fluid came about after mild pneumonia after gall bladder surgery in late January. Good to hear about the Vidaza: have you been on a regular dose (ie, 7 days on, 21 off) for over two years now or did they reduce your dose after a while?

[Harold]

I stayed on the full dose (75 mg/m2) 7 days on, 21 days off until 10/31/05. Since then I have been on the full dose (75mg/m2) 7 days on, 35 days off. The schedule was changed to 1 week every 6 weeks because of low platelet count (9-16K). The extra 2 weeks has allowed the platelet count to recover some (20-35K). I don’t have any symptoms with the low platelets. I am having a bronchoscopy tomorrow to help determine what’s going on in the lungs.

[Author]

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