Acute Myelogenous Leukemia (AML) Support Group

Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.

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chicagomomof3 01/12/2015

Last post for today! I promise! Has anyone else had AML found in their CSF (cerebral spinal fluid)? My drs found it there early on and put in an Oomya pump in my head to take spinal fluid samples and to administer methotrexite. While the chemo makes me sick, the use of the pump is much better than the lumbar punctures!! I was able to stop the chemo to the CSF after 6 negative tests in a row which happened jjust before Thanksgiving. Wondering if anyone else has experience with CNS involvement? My CTs and MRIs were clear just found in CSF. Now I have to do radiation therapy in March to make sure its all out of CSF. Also wondering how the radiation effects people. How sick should I expect to be?

ccwong 01/12/2015

Sorry to hear that you are in this support group. I sympathize with you immensely since my brother has two kids at age 2 & 3. Jack had radiation twice a day prior to transplant and he had a very difficult time. He's 41 and was extremely healthy prior to AML/pneumonia at this first diagnosis in dec 2013. We have another friend at City of Hope here in Duarte california that also had very intense radiation prior to transplant and was quite sick-nausea, vomiting and the whole nine yards :(

Although this whole disease is very rough, you will be strong and get through it. You are doing radiation to clear the CSF so my comment may be different than what you are going through since both cases I'm talking about was to prep for BMT

dbrowncsuaedu 01/12/2015

I hope there might be someone listening in who might be able to speak on this -- it sounds very much different from the typical DX and treatments. The lack of response is not due to a lack of interest -- its just that this is a very rare thing. I knew someone who had CML and had to get chemo in a spinal tap on a monthly basis, but I have lost touch with her now. I will say this -- she was doing quite well last I heard from her. -- dave

mtnbyker 01/13/2015

I think that warriormm has spinal fluid involvement, she only checks in occasionally, if you search through the threads you may find her and send an message to her.

mtnbyker 01/13/2015

Thread here:

http://www.dailystrength.org/c/Acute_Myelogenous_Leukemia_AML/forum/19829785-wrong-me

Hopefully she can help.
DaveJ

chicagomomof3 01/13/2015

Thanks all! Yes, it is a rare DX but my drs seem to think its not a big deal since its in remission and went easily. I sure hope they are right.

dbrowncsuaedu 01/13/2015

Well that is great news -- perhaps being localized like that has an up side. Hopefully someone with this experience will be reading. -- daveB

Noodle65 01/13/2015

Chicago mom,

I would be very optimistic with six negative tests. Praying for you.

Blessings

Julie

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