CMML

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CMML

by Pepper27 on Sat Oct 17, 2009 12:00 AM

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I was told that CMML is very rare. There aren't many studies out there for this. I am looking for other people or more information on this Leukemia.

RE: CMML

by Grog1 on Sat Oct 17, 2009 12:00 AM

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Me too.  My wife was dx with it just this mouth. I'm in the dark also. I have not been able to find much info on this only web sites telling what CMML means. I started a message and typed it wrong MCCL on it I list what the letters mean on there. 

In my wife's case her autoimmune system is attacking her red blood cells. The white blood cell encapsulate the red cells and than when they pass though the spline the encapsulated red cells or removed. Her bone marrow is working over time trying to keep up with the demand for more red cells and lots of immature red cells or staying in the bone marrow which is deforming the marrow. The other result is the dropping of the platelet count. Also one of her white cell counts is going up. All most all her blood counts or either low or high. Not all our way off only the platelet and the one white cell or way off. This is how I understand my wife's condition as told us by Dr. The first M in CMML is the Myelomenia (bone marrow) which is becoming deformed. The second M is Monocytic (one of white cell). So CMML is Leukemia of bone marrow and white blood cell or autoimmune system in my wife's case anyway.   

RE: CMML

by Pepper27 on Sun Oct 18, 2009 12:00 AM

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On 10/17/2009 Grog1 wrote:

Me too.  My wife was dx with it just this mouth. I'm in the dark also. I have not been able to find much info on this only web sites telling what CMML means. I started a message and typed it wrong MCCL on it I list what the letters mean on there. 

In my wife's case her autoimmune system is attacking her red blood cells. The white blood cell encapsulate the red cells and than when they pass though the spline the encapsulated red cells or removed. Her bone marrow is working over time trying to keep up with the demand for more red cells and lots of immature red cells or staying in the bone marrow which is deforming the marrow. The other result is the dropping of the platelet count. Also one of her white cell counts is going up. All most all her blood counts or either low or high. Not all our way off only the platelet and the one white cell or way off. This is how I understand my wife's condition as told us by Dr. The first M in CMML is the Myelomenia (bone marrow) which is becoming deformed. The second M is Monocytic (one of white cell). So CMML is Leukemia of bone marrow and white blood cell or autoimmune system in my wife's case anyway.   


Yes. it sounds exactly what I have. We have found out that this can be found by a simple blood test. I was even under the care of a hematologist for an entire year and she would tell me that I was a puzzle. I wasted my time with her and nearly died as a result of it. Well, I went two years with the symptoms until I nearly died in ICU. The hospitals in Austin, Tx nearly killed me because they didn't know what they were looking at. I went through 8 bone marrow and lymp node biopies and they still didn't have a clue. I had to take my tests and scans to MD Anderson Cancer Center in Houston to be diagnosed. It is really sad that the lab techs and doctors don't know enough about this disease. I wished I could find an attorney to take my case against  the hospitals for not catching it sooner. I just don't want anyone else to go through the Hell I did. If I hadn't ate healthy and walked every day, I would have died. The fluid had built up around my lungs and heart until I could no longer breathe. I was on life support in ICU for 8 days. The surgeon who operated on my heart said I had a very strong heart which saved me. 

RE: CMML

by Grog1 on Thu Oct 22, 2009 12:00 AM

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We where lucky I guess as wife was sent to the Cancer Center here in Lincoln, NE as soon as our MD saw that her platelet counts were so low 51000, in the next three weeks it dropped to 34000. She is on Prednasone now and the platelet count has stopped falling and some of her other blood counts have improved. Dr said she can only use this for 30 days as dosage is so high. The hope is to shock the autoimmune system and get it to stop attacking the red blood cells. We have two more weeks to go with the Prednasone.

RE: CMML

by Grog1 on Mon Oct 26, 2009 06:48 PM

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Seeing a Dr can be scary. I had a cough a few years ago I spent a year going from one Sp. to another and none could find anything wrong. I was finally sent to a ENT and the first time I was there he said he would scope my noise. He told me this every time I seen him four visits latter he finally did do it and found I had a sines infection. My brother in law went in to have a enlarged spline removed and afterward his lever failed his enlarged spline was probably do to lever problems but they didn't check for this or didn't realize it till it was to late. He almost died from it been in ICU for 30 days and they were talking lever transplant. Well he is finally en proving and out of ICU. Wife blood work from today are much better and her platelet numbers went up for first time sense this all started they or now 40000 should be 150000 or better. But this is encouraging as it had been falling ever-time they tested her.

RE: CMML

by Grog1 on Fri Oct 30, 2009 02:29 PM

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On Oct 17, 2009 12:00 AM Pepper27 wrote:

I was told that CMML is very rare. There aren't many studies out there for this. I am looking for other people or more information on this Leukemia.

I have been doing searches on the web but there doesn't seem to be much on this form of Leukemia. I found the Amercan Cancer Society. There is some info but most is not new and has been on other sites.

 

http://www.cancer.org/docroot/CRI/CRI_2x.asp?sitearea=&d

RE: CMML

by Pepper27 on Fri Oct 30, 2009 06:40 PM

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Thank you for your research. Yes, there is very little info out there. I am in the process of convincing the SSDI that I can not longer work. I have little energy, suppressed immune system(scratch/mosquito bite) sends me to ER,  oral chemo affects me mentally, and my legs below knees will get unexplained swelling almost doubling in size. So painful, that I have to elevate them for a week at a time. I worked 35 years in manufacturing and now I can not longer work.

RE: CMML

by Grog1 on Tue Nov 03, 2009 01:44 PM

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My wife also had swelling of her lower legs mostly around angles and they would be black and blue without any injury. She has one more week of Prednasone. If this does not get autoimmune work they will treat her with Rituxan. This is antibody that is taken by IV takes 6 hrs. It attacks specific kinds of cells in the immune system and kills them. This will knock out must of her immune system.

RE: CMML

by Pepper27 on Tue Nov 03, 2009 02:23 PM

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Hi. I didn't ask but is your wife drawing SSI? I have applied and was denied the first time. This is a waste of my time and the tax payers time when a person has an incurable disease to deny them. I feel it is a game the government plays with people's lives. I worked for 35 years steady and now I can no longer work. I have paid in alot over the years. It is suppose to be our insurance in case we become disable. It may not do any good but I wrote to my Senator about my case.

 

RE: CMML

by Grog1 on Thu Nov 05, 2009 03:24 AM

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No we still have heath insurance until I reach 65 but if wife uses or max out we will have to look into it. I have a friend who has lots of heath problems and she just got on it took a couple try's before she got it. She has no heath insurance and no job she almost died on us three weeks ago. She had several different infections at same time. Lost so much weight that wasn't much left of her. She just getting up and around but tires very easy.

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