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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Leukemias
/ Acute Myelogenous Leukemia (AML) Support Group

What is wrong with me?

warrioremm
warrioremm
Am in second remission, which has been going great! Blood work always looks good and doctor even lowered my visits to once a week. Still getting spinal chemo once a month. My spinal chemos have been clear for months, but the one last week came back with "rare atypical cells suspicious of AML."
A day after the chemo I awoke with strange throbbing headache and got sick. Had the throbbing headache for days, until my spinal chemo today. My doctor ordered another to recheck the cells and use a stronger chemo agent. This spinal tap completely got rid of my headache.
Apparently, my spinal fluid pressure was high and that was causing the headaches. As soon as they started draining the fluid, the headache was gone. However, when I went to sleep tonight, I noticed the same throbbing headache returning. How could it come back already?
Has anyone experienced this before? Or know what could be causing it? Don't know if it's IIH or maybe panic attacks? I am also experiencing some facial palsy. I am still waiting on the full results on the rechecked spinal tap. I'm, of course, very worried that the leukemia may have lingered in or returned to my spine even after BMT and DLI.
LoriChallinor
LoriChallinor
Warrioremm, as I remember, you had some challenges getting into the second remission, is that right? And they are doing the chemo post bmt because you had central nervous system involvement? What did your doctor say about the spinal tap results with the abnormal cells? I think that your doctor needs to communicate better because you should not be left wondering about all these questions; they are important ones and you deserve informed answers. I don't have experience with this personally but perhaps someone else here does.
dbrowncsuaedu
dbrowncsuaedu
We will be praying that the problem is nothing more than a response to your treatment. I know that it is hard not to attribute just about everything to a relapse (most of us have been there), but rarely is that the case. There are just so many other things. I agree with Lori -- your med folks are the best for advice here. Yours is a very rare situation and I doubt anyone has been through just what you are describing, but if there is someone, please help. Thanks -- dave
xuelan
xuelan
Warrioremm,

I don't know what to say without knowing what is actually going on, and I don't have an explanation for the high CSF pressure. I wonder if the spinal chemo has caused some irritation that is impeding the absorption of the spinal fluid, leading to high pressure. I don't know how to interpret the cells, but I definitely think that the high pressure is the cause of your headaches, Please let me know when you know anything, and I will do my best to either interpret it or get it interpreted.

Hang in there.,

Cliff
warrioremm
warrioremm
I appreciate your replies, as always. I know my post may have seemed all over the place and not quite clear or detailed. I was panicked last night after experiencing the headache again after the spinal tap. It did eventually go away last night. I'm going to speak to my doctor again tomorrow and hope that my most recent spinal tap results will be in, and I'll get a clearer picture of my situation. Right now, my blood work is perfectly fine, and I have been feeling perfectly fine. The worry is the high csf pressure, the atypical cells, and the facial palsy. I'll post again after I speak to my doctor tomorrow. Praying that it's all nothing. Thanks!
xuelan
xuelan
warrioremm,

I didn't catch the part about the facial palsy. Has your doctor entertained the thought that this could be a viral illness or a disease like Lyme/ That might put it all together.

Hope the CSF results are good.

Cliff
warrioremm
warrioremm
Apparently, my most recent spinal tap results showed the same thing as last week's: some suspicious cells that could be indicative of relapsed AML. My facial palsy seems to be getting a little better day by day. My doctor just tells me to "hang in there." Says the situation right now is not bad, but not good. The worst case scenario he gave me is that there may be some leukemic cells still in spinal fluid, in which case he is confident that radiation would help. My blood work still looks fine, and he thinks my marrow is unaffected, as well. He has scheduled an MRI for me next week, I guess bc of the facial palsy. Has also decided to move my spinal taps back to once a week instead of once a month, perhaps (hopefully) until the situation resolves. Has also changed my spinal chemo agent from cytarabine to methotrexate. I am, of course, glad that my doctor has a plan to tackle this, no matter what it is. But, I'm still hoping so much that perhaps it's just some kind of viral infection.
salpalwifey
salpalwifey
Hi Warrioremm, I have been thinking about you and wondering how the MRI went a couple weeks ago. Also, hAve you had any radiation for your spine yet? I'm sending healing strength your way!!

xoxo
Monique