Chemicals in My APL Soup

Cytarabine (Ara-C), daunorubicin, ATRA (all-trans retinoic acid), arsenic trioxide (Trisenox),  some more daunorubicin, then methotrexate, more  ATRA, and   M6 Mercaptopurine.   Hmmm, yummy !

Those are the standard drugs for the M-3 subtype of acute myeloid leukemia.  Or, for those in the know, acute promyelocytic leukemia, which accounts for about %10 of all AMLs.  Some people get some of those, I got them all over nineteen months.

When I was first diagnosed, I spent six weeks in the hospital. I started getting ATRA (pills) on day 2 when the lab work was back to know that’s what I needed.  The next day, I started the first of three days of daunorubicin (the red stuff), and  the first of seven bags of Ara-C (each bag hung for 24 hours over 8 consecutive days).  I only thought I felt bad when I got there- but even now, I realize I was too sick to really care how sick I felt.  Overall, however, the side effects were managed well.

The biggest side effects involved my mucous membranes (mostly my mouth and innards) and hair loss (which I couldn’t  have cared less about).  There was some “Magic Mouthwash” stuff that had some numbing medicine and other ingredients to make my mouth feel less like a gravel pit whenever anything touched it.  Otherwise, it was like all of the little wrinkles on the roof of my mouth had smoothed out.  My innards were just sensitive, and there was an express route between my stomach and back door.  The back door got tender.  I only puked once.

My tastebuds died.  Well, actually they just got very ill. Or psychotic.  I craved kosher dill Claussen pickles for a while, then sandwich cookies (which that dear dietician managed to find in various flavors).  I was losing 5 pounds a week (muscle weight), and even though I wasn’t exactly going to die of starvation, I needed to keep my nutritional status up.  The dietician was in my room a lot, bless her heart (and I mean that in a good way- not how it can be used in the South, ha !).  I was loving one food one day, and the next day I never wanted to see it again. She had every menu in the building in my room, and I was allowed to order from any of them.  For a while, I even craved baby food pears and applesauce.  When they sent the jar of peas, I bailed on that option. Bleh.

The hair loss was not something I really cared about, aside from the straggly hairs that refused to give up.  I saw scalp hair loss as an all-or-nothing event.  If most went, all had to go. The strays near my forehead were unceremoniously whacked off by my father with some poultry shears he found in my kitchen.  Chicken scissors for hair trimming. Well, OK.  It worked.  My eyebrows, arm and leg hair, and any other hairs were MIA for over a year altogether.  No biggie.  I didn’t want a wig- so if I felt really spiffy, I’d wear a bandana, or a hat crocheted by my bio-mom.  I’d gotten my first crocheted hat at the hospital, but my favorites were the ones made for me. 🙂

After the induction chemo, I took the ATRA until starting the consolidation chemo – which consisted of arsenic.  Yep. Arsenic.  Trisenox, when not used in first degree murder.  I got fifty doses; two 25-dose cycles.  I had to start out the first week in the hospital to be on a heart monitor.  Then I went to the hospital every day I got the stuff to be hooked up for monitoring. I couldn’t be in the chemo suite at the doc’s office.  I was really tired from the arsenic, but that was the main effect. I’d been told it’s really hard on the stomach, and nausea/vomiting were common; I never puked from arsenic.  I did wonder if I’d croak from heavy metal poisoning while being cured of leukemia.  Hmm. I had a brief second round of daunorubicin, but had to stop that since my heart function was starting to look iffy.  Side effect of chemo drugs.  That and weight gain… I didn’t end up looking like I’d been on chemo; I looked like I’d spent six months eating food from the county fair.

Then I started maintenance… ATRA (did I mention that stuff is about  $120K if someone doesn’t have insurance? ), methotrexate, and M6-mercaptopurine, all on different schedules.  I was supposed to take those for a year.  I made it for 11 months.  The muscle and bone pain were pretty intense, and my  doc said I’d had enough.  I told him I’d stick it out if it meant staying alive, but he said no- I’d be OK.   I’d had no relapses since going into remission in the hospital that initial time, and no major issues come up since the shingles during that last week of arsenic.  My lab work had stayed stable.  I was done.

I’ve been off of all chemo for 11 months.

Published by JillinoisRN

A disabled RN who is still trying to find ways to help people. I've got a lot of interests, and a lot of things I'd like to convey to people.... whether they want to 'hear' them remains to be seen :)

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