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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warrioremm 07/30/2014

I just got out of the hospital after a month. My AML had relapsed post-transplant and I have been receiving lumbar punctures twice a week. I have had 8 done so far. I'm finally realizing that the ice-pick headaches and neck aches I've been suffering from are probably from the LPs. I've only noticed the pain in the last week or two.

Has anyone else received lumbar punctures w/ chemo and had these headaches? I know they can be a common side effect and are supposed to go away w/in a couple days. But, since I'm having LPs done twice a week, the pain doesn't seem to go away. It's not constant, but I feel it throughout the day. I haven't told my doctors yet, because I honestly thought the pain was just stiffness from laying in a hospital bed for a month. I'm going to tell them at my next meeting. Is there a way to stop the headaches or will I just need to keep taking Tylenol? I have to do something because I'm going to be receiving LPs for a long time.

dbrowncsuaedu 07/30/2014

For sure let them know -- do not mask it with Tylenol, at least a few days before you are going to see them so that they can understand the full extent of the problem. Tylenol is good short term but it has its problem when used extensively -- I guess like just about anything else does as well. Aspirin used to work really good for me but because of my platelets they keep me off of it for now. There are some other anti inflamants that might serve as well. I knew of someone with CLL that was getting this therapy and it worked out well but it took a long time. And she was young -- 17 when we first started e-mailing and now she is over 20, and doing quite well -- not perfect, but not that bad either.

Praying for you -- dave

salpalwifey 07/30/2014

Hi Warrior, glad to see you're out of the hospital but sorry to hear about your pain.

Call the doctor now, before you're next appointment to let them know of your pain. That's what they are there for. Don't suffer while wsiting for your appointment.

Tell them about your pain and find out how they want you to manage it. It might be "normal" pain you are experiencing from lumbar punctures, but Tylenol (acetaminophen) can be too rough on your liver with all the other chemo/meds you are already getting. (They took my husband off Vicodin because the acetaminophen was negatively affecting his liver function.)

Sending hugs, strength and good health your way,

Monique

ccwong 07/31/2014

Hang in there! AML is such an emotional rollercoaster. You are young and God has a special plan for you!

mtnbyker 07/31/2014

Sorry you're having the headaches, they are so painful, an irritation you don't need right now. Let the doc know now, they wont want you to be suffering form these and hopefully can get you some relief.

Praying for a complete cure and back to a normal life.

DaveJ

CajunGirl2015 07/31/2014

So glad to see you back. I had been thinking about you because I hadn't seen you post in a while. Praying for your treatment. I agree with the others. Don't wait, call your doctors now. There may be something they can do to help the pain sooner.

Debbie

warrioremm 08/04/2014

Thank you all for your prompt, helpful responses! I really appreciate the support and understanding. I spoke w/ my doctor today before my 9th lumbar puncture, and told him of my head and neck pain. He first suggested caffeine, and told me I could continue to use Tylenol. He then decided to put me on decadron steroids to help w/ inflammation and the headaches. A little wary of the possible side effects of oral steroids, but hoping it helps with the pain.

I had a little scare tonight when I looked at my spinal lab results. CSF has been clear every time. But this time it was "pink and hazy." Of course, this made me freak out and think that something bad was back in my spinal fluid. My doctor, however, said that there could be some blood in the fluid if the procedure was more traumatic. In fact, it was the worst lumbar puncture I've had so far. I'm usually very good w/

warrioremm 08/04/2014

W/ pain, but this procedure hurt! The doctor did IMG_3813.JPGnot seem to be happy w/ his needle placement, and the electric shock in my leg that you're only supposed to feel once, I felt about 10 times. Not sure what made the procedure so unpleasant this time, other than the doctor and his technique.

xuelan 08/04/2014

Warrior,

Just keep looking forward. I am sorry that you have to get those painful LPs. If it will make you healthy, then it is worth it.

With regard to your LP this time, I am quite sure from your description that it was a traumatic tap. That happens sometimes and as long as the pain control is decent, I guarantee you that you will get over this.

What is the complete game plan for your treatment in addition to the chemo in the CSF?

I am thinking about you and your bravery. Keep on truckin'.

Cliff

warrioremm 08/05/2014

Thank you, Cliff. Yes, my doctor believes, as well, that it was a traumatic tap. No one had told me about those yet. Just the headaches. They have been getting more difficult for me, but I am so grateful that I still have these options to treat me, and that the spinal chemo is working for me.

My blood and spinal fluid have remained clear since latest chemo. Going to have a bone marrow biopsy done this week. If bone marrow is clear, as well, then I will be in remission again. Then I will receive another round of chemo and a DLI of my brother's (my previous donor's) cells to try and fight any residual leukemia.

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