aml

[VA Gal]

Hi All,

I am hoping someone can help me determine when mds progresses to aml. My mother was diagnosed with MDS approximately 2 years ago. It has been very frustrating getting any useful information from the doctors. As best I can determine she is probably RAEB2 but I think she could be heading toward aml. The WBC for 18 mos. was less than 2, but in the last three months it has gone from 1.7 to 13.5. RBC was 7, PLT 28,000. Transfusion dependent RBC, PLT. 10% blasts BM. Has taken 5-azacytidine for a period of 6 months a year ago. Currently began treatment again-1st round 1 wk ago. I think the increase in WBC indicates progression to AML. Can anyone tell me if this appears to be an indication in their experience with MDS/AML?

[patti]

Hi,

I’m sorry you’re having difficulty getting answers from your mom’s doctors. We’ve been there and it’s very frustrating. Technically speaking, the only way to know if your mom has AML is a bone marrow biopsy.

I can share with you our experience and you can gleen from it what you want. We believe my MIL flipped to AML about a year ago when we saw her white cells do what your mom’s are. The doctor does not want to do a BMB because her platelets are low and even with an infusion of platelets feels like it would be too much trauma on my MIL’s body. My MIL became platelet tranfusion dependent recently and the doctor feels that is one more indicator that she has AML. However, you have to keep in mind that MDS can cause platelet transfusion dependency also so that is not necessarily a good way to tell. Rapid white cell increases are the most common sign.

I guess my best recommendation would be to get a second opinion ASAP from another doctor. If your mom does have AML there are other treatments available for it that are not available for MDS. Acting fast is important though.

All the best,

patti

[cthomas555]

VA Gal,

I hope this helps…

“AML is diagnosed when blood and bone marrow samples show a large number of leukemia cells. AML has eight subtypes, labeled M0 through M7. The subtypes are based on the type of blood cells affected. To find out the sub type and how well the leukemia might respond to treatment, the samples are looked at to find:

* The number of healthy blood cells.
* The size and number of leukemia cells.
* The changes that appear in the chromosomes of the leukemia cells. This is called cytogenetics.

Doctors also examine the patient to find out if leukemia cells have spread outside the blood and bone marrow. Doctors may use a chest X-ray and an ultrasound of the abdomen to look at the organs and tissues inside. They may also use a test called a lumbar puncture (spinal tap) to find out whether there are leukemia cells in the fluid around the brain and spinal cord.”

For more information go to:

http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/AML/index.html

[VA Gal]

Hi Patti & Chris,

Thanks so much for responding so quickly. Your information was very helpful and the website has provided me with some answers. It appears from your experiences Patti, and the info from the website, that things are probably not very good with Mom. We did see a specialist in Oct from MCV Bone Marrow Transplant division for a second opinion. Mom wanted to try Dacogen, but he said she wouldn’t live through it. I asked about the high WBC level and he said it could be an indication of leukemia. He suggested doing the 5-azacytidine treatment again and he did not recommend doing another BMB. He said it was a quality of life issue.

I guess we will see how Mom responds to the 5-azacytidine treatment. She will get another CBC on Thursday and hopefully we will get the results from the last blood tests.

Thanks again for being so helpful. I just found this website. It helps to know there is a place to come to with questions and for answers from others that are going through a similar situation.

I hope you have had a good day.

[Terri]

VA Gal, Bob’s whites are always high, and sometimes no underlying reasons. He has been off the vidaza for a few months due to other problems, Just started back today whites were in the 50’s and last week in the 20’s. Our hemo said to watch the grans on the cbc report we get as they would plummet if he was heading to aml even with the whites increased. Bob is now 2 years on the Vidaza and as previously indicated in other post Our dr feels it is the drug of choice for Bob. Everyone reacts differently and apparently Bob reacts well to this drug. Blast are controlled, TX free for some time except when he had the bleed episode but that has been resolved for awhile.

I hope your Mom is doing well

[VA Gal]

Terri,

I’m still learning about all of this. What are the grans?

Glad to hear Bob is doing well on Vidaza and has been TX free for a while.

[Terri]

Granules, Its a part of the WBC counts and I am not the best to explain all of the counts. Neil usually will post a website with the explanations on the cbc and I always refer back to it.

[shirlsgirl]

Hi VA Gal,

Grans is short for Granulocytes. They are white cells that contain granules. There are different types of granulocytes:

neutrophils which fight bacteria

eosinophils which increase in response to allergic reaction

and basophils (um, can’t remember sorry)

There are also lymphocytes and monocytes..their cytoplasm is not granular so they aren’t classified as granulocytes.

http://www.rnceus.com/cbc/cbcwbc.html

http://health.enotes.com/nursing-encyclopedia/white-blood-cell-count-differential

Best of luck to your Mom! Hoping all goes well with her 5-azacytidine treatment.

take care,

Jody

[VA Gal]

Thanks for the explanations and the websites. This has helped me to understand some of what the dr was talking about. Seems like it is a never- ending learning process.

Mom didn’t feel too well yesterday and today-no energy. She is headed to the hospital in the morning to get a CBC to see what’s going on.

[Lydia]

Hi VA Gal, hope you mom does well with her treatment and improves very soon.

My mom just had another bone marrow done and her doc said “her disease is progressing” with no other explanation, so I know how frustrating this all is. Mom won’t ask questions or switch doctors. So I assume it has or he thinks it has progressed to AML.

All the info posted above from everyone has also helped with my questions too. Been on the internet for several hours looking for a translation to the numbers she gave me over the phone. Will post under another topic.

[jga_socal]

Here is a website that explains many lab tests including CBC, CMP, etc…
http://www.labtestsonline.org

[Jim]

Folks on the list have mentioned having “leukemic events” when MDS goes to AML. What is a Leukemic event?

JW

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