Tuesday, October 30, 2012 Dreaded Meds

Posted on October 30, 2012. Filed under: Cancer | Tags: , , |

While the superstorm, Sandy was pounding the East Coast, I lay in bed and noticed an email with my test results from the bone marrow biopsy. I debated peeking at it just before trying to go to sleep, but I couldn’t resist and I expected it would be clear….and it was. No evidence of cooties. Yay.

However, I realize I am facing the next step, maintenance, with trepidation. I finally got the guts to Google one of my meds, tretinoin, which I’ve been on before, so I know I can tolerate it even though one report said some people die from it causing liver failure etc. I wanted to get a sense of protocols, but the reports are all over the place. Some say I’m supposed to be on two meds for six months. NIH says you shouldn’t be on tretinoin for more than 90 days. Others say three different meds for a year, which seems way too long. I FINALLY found where Dr. G got his protocols from, which was the Leukemia and Lymphoma Society—although it spends NO money on researching APL because so few people get it.


 I find it disturbing that they suggest two years of drugs for optimal effect. Dr. G said a year, but maybe he’s just protecting me. I’m trying to work up the guts to look up the other two drugs now which are mercaptopurine (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000737/  100 mg in two capsules every day) and methotrexate (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000547/  30 mg/16 pills once a week). The tretenoin is 5 pills 12 hours apart for a week and then a week off…for a year. All cause hair loss, so I don’t know when I’ll see my hair grow again. We are making a checklist to keep track. Don’t worry…I already have the old-lady plastic pill carrier with the days of the week on it. I’m sure there will be periodic bone marrow biopsies.

Although whatever info I find will say that the risk for horrid side effects is low, that doesn’t seem to be the way I roll. Most people are incapacitated by chemo, while I was fairly functional. Most people don’t get leukemia from radiation, but I did. Most people don’t get APL, but I did. That phrase “low risk” is not very comforting. Well, Monday I start shoveling pills in my mouth. Before that, I will spend several hours cringing at side-effect lists. Or maybe I should just wolf ’em down and see what happens.

On the bright side, After three years of popping daily Allegra I haven’t had an allergy pill since spring and I have yet to get one of those annoying sinus infections that used to frequent my head. Plus, I started eating tomatoes and bread again and don’t seem to have any sniffles. Cool.


This morning Scott and I ventured to the lake to see the big waves we’d heard about. The radio said some streets were closed because of them. We were somewhat disappointed. While the waves were pretty big, they weren’t all that impressive. But it was freezing out there! Maybe Sandy’s effects have yet to hit the Midwest. Luckily, Veronica is arriving home today from the East coast. I can’t wait to hear her first-hand account of life on Virginia Beach.

This afternoon, I submitted some poems to a literary journal which has been on my list of things to do for way to long.

Also, I had to go to the bank so I bundled up and Scott and I walked the two miles. Not bad.  As you can see, I’m in a bit of a funk and he is being awesomely sweet.

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