Acute Myelogenous Leukemia Update

I already wrote about my experience running a local 5k race to finish the Cancer to 5k program last weekend.

Yesterday, I had a checkup with my oncologist at MD Anderson Cancer Center. It was my first “3 month” visit, meaning my previous visits had all been at about 1-1.5mo intervals. Last time, though, my doctor decided to let me go for 3 months between appointments. I had anxiously been awaiting the time when my appointment intervals would start increasing.

To recap, I finished high-dose chemotherapy about 1 year ago. I was on the FLAG study protocol for my AML, which included cytarabine, fludarabine, and mylotarg to see if the combination of drugs improved survival. The original protocol called for 8 total rounds of chemo with 3 rounds of mylotarg. Due to my unique situation, I only wound up getting one dose of mylotarg. After a rest period waiting for my blood cell counts to recover, my platelet counts were still depressed. My oncologist decided to give me vidaza, which is supposed to help the body make healthy blood cells after a few rounds. I got 3 rounds of that stuff, I think, and my platelet counts just would not recover fully. I’d get up to ~100-110k (normal is ~140-440k) and plateau. A bone marrow biopsy confirmed that I have low platelets because I don’t have many megakaryocytes (platelet progenitor cells).

The theory behind that is this:
I was admitted to the hospital in an emergency situation. Complications made the situation dire, and even though the doctors really would have preferred to resolve the complications before giving me chemo, they’d tried everything they could short of starting my chemo and it didn’t work. So, they gave me chemo when I was dealing with liver failure and kidney failure. It ended up that I started getting better after that, but it’s becoming apparent now that getting high dose chemo when your liver doesn’t work so well has a tendency to nuke your bone marrow.

So…low platelet counts are just something I’m going to have to deal with for awhile. I hope that over time, my body is able to produce more megakaryocytes so I can get my platelet counts back up where they’re supposed to be. But with my platelets where they are now, my doctor is not exceptionally concerned. I still crash my mountain bike and bleed…and those wounds clot just fine.

My oncologist still wants to give my body time to recuperate. He wants my next appointment to be in 4 months…which interestingly enough puts me at the 2 year mark of my diagnosis and hospitalization.

Another thing I’m dealing with right now are some cognitive effects of leukemia, my complications, and the treatment I went through. LiveStrong recently posted this article about cognitive effects on Facebook where it got my attention.

You see, I’m having a few difficulties. The first one I noticed, I’d have to say, is a desire to sleep more than I used to. I used to really enjoy my sleep time and I’d strongly prefer being able to get 10hrs per night. Nowadays, though, I find that I have a hard time functioning at all on less than that. While going through training for the Cancer to 5k program, I’d really push myself to do my workouts in the mornings. Partially so I would have some motivation to get up early, but also partially because it gets so stinking hot down here in the summer. I found that I could push myself to get up a couple mornings a week, but I’d have to crash out for a 12hr sleep session one or two nights per week to recover. Ugh, it’s frustrating when you’ve got WORK to do and limited time to do it.

The other cognitive effects I’ve noticed have to do with school and learning. I’ve noticed that my attention span isn’t what it used to be. I find it challenging to focus on one thing for very long. That is affecting my ability to learn and study, but I also seem to have memory difficulties, too.

Well, as it turns out, the problems I seem to be having are mostly considered “dementia” problems, which tend to be chronic meaning they take a long time to develop and they last a long time – in fact, they may not ever go away.

The changes I’ve noticed could have happened in different ways. First off, the best theory we have now is that the leukemia actually got into my brain, which is what caused the brain stem swelling that nearly killed me. At minimum, the swelling did damage my brain. The leukemia itself may have done some damage, too. Treatments administered directly to the central nervous system also can cause damage. I received intrathecal (directly into my spinal column) cytarabine. That’s a candidate for scrambling my brain. There’s a general statement about treatments given when the patient is extremely ill. Well, I was in a coma for my consolidation round of chemo. I suppose that counts as “extremely ill”, doesn’t it? Other conditions associated with cancer can be problematic, too. In my case, I had difficulties with magnesium levels. Electrolyte problems can result in cognitive changes, too. Yay!

The university, unfortunately, is not equipped to deal with the challenges I face. I went to the disability services office to see if they had any programs to help. Hmmm…in short, no. All they could offer me was a helper to take notes for me (that might actually make it harder for me to learn) or some sort of private or extended test-taking options (also, not helpful for me. If I know the material, I can recall it pretty easily).

My biggest problem related to school is that I do not learn the same way now as I used to. All I’ve been able to do so far is to talk to my professors to make them aware of the challenges I’m facing. So far, the only thing I’ve found that works is to dedicate entire DAYS to studying for an exam. I had one today and I think I averaged about 5hrs per day of studying for a week on top of regular work every week. Based on how I recalled material, I feel like I should at least pass the exam, which is all I’m asking for at this point. Unfortunately, I’m unable to spend much time on my thesis due to the amount of time I HAVE to dedicate to my classes just to pass.

It’s going to be a challenging 9 months to finish my thesis and graduate and I’m absolutely going to be glad when it’s over. Then, I think, I should find myself a job where I get to spend a good bit of time outside the office so I don’t have simple distractions at my fingertips.

2 thoughts on “Acute Myelogenous Leukemia Update”

  1. Just found your site, great stuff and lost of things to read. WELL DONE.
    Then I was surprised to read we had someting in common LEUKEMIA..!!
    I have CLL, Chronic lymphocytic Leukemia. My prognosis is not good, and I expect to have chemo at some time when the white blood cell counts get too high. As they told me:- Welcome to the club that nobody wanted to join.!!
    The side effects of the chemo are well known to the CLL groups, and is called ” Chemo-Brain ” There are many reports of this on the ACOR web pages. I can totally understand your problems at university.
    There is recent research that clearly shows that active fit people suffer less from the leukemia and stay healthy longer. Thus like Chris Dwyer another CLL patient ( ) we are out there exercising on a regular basis.
    For myself this means long all day hikes either in England or in the summer up the mountains at my wife’s home in Switzerland. I have a Garmin 62s with 1:25k mapping loaded and then I keep records of my travels in BaseCamp.
    I will watch your site with interest. Good luck and STAY HEALTHY.
    Dick Morris

    1. keep up the good fight. I have to agree about healthy active folks appearing stronger and fighting this terrible disease apparently better. This thing knocked me down hard but I’m back and I’m stronger in some ways (even physically) than before.

      I actually had very few of the immediate side-effects of chemo. I did have chemo-brain while I was undergoing treatment, though. The cognitive issues I’m having now are a bit different than that, though. I’ve transitioned into the long-term side-effects territory (I’m 1yr out from my last high dose chemo treatment now) and there’s a whole host of things that crop up at this point.

      I’ve been told by my doctors that working on puzzles can help the brain out in the event of injury. Every now and again, I’ll pull out some logic puzzles or somesuch to give my brain a workout. Hopefully that will help mitigate some of the problems I’ve had.

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