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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6 Responses to “Tuesday, October 30, 2012 Dreaded Meds”

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I was just talking to a friend of mine today who has been seriously sick. Symptoms were pointing to ms or all kinds of awful things but it turned out to be Lyme Disease. (He’s in Wisconsin.) Well, the doctors, diagnoses, remedies, etc. are all over the place. His first symptoms started 6 years ago with a partial paralysis on his face. He was tested then and it came out negative, but apparently 40% of those tested with this test show as negative for Lyme, which is how he tested. There is a second test which is more accurate and more expensive and neither doctor’s nor insurance companies want to cover it. (It’s bad for tourism to have too many Lyme cases…) The treatment given by traditional practitioners is 1 month of antibiotics while the alternative medicine community recommends at least 6 months to a year. He’s had to do all of this research to even figure out the questions he needs to be asking.

Several other friends have weird diseases and they are all serious but treatable. One had to have a bone marrow transplant, another also got cancer, like you, two years after having had breast cancer treatments and so on. I think it is amazing what modern medicine can do, but it is just daunting how you and these others have had to almost become scientists yourselves to even begin to understand what you are going through, what the alternatives are and what the docs are not telling you. I think that the internet and the community out there has really helped disseminate information, but at the same time, navigating through all the information must just be awful…

So, I admire your tenacity, smartness, humor, and strength in dealing with all of this! And, you and Scott are both lucky to have each other. Thanks for sharing all that you go through so openly.

Sorry for the many friends who are going through crap, but it’s nice to know I’m not the only one. Thanks for the kind words.

I was on the same maintenance for a year…. I’ve been off of all chemo for 13 months now. The first few months weren’t bad, though the fatigue was a problem. It got worse for me, but I didn’t have bad nausea and vomiting. I did end up with muscle and joint pain- I should have spoken up sooner than I did- so let your onc. know if you start to hurt. I gained weight (not what I’d expected or needed) ❤ I think you're the first person I've read who was on the same stuff !! APL??? Did you have arsenic? I had 50 doses.

OH, also- I didn’t lose any hair during maintenance… it got kind of weirdly curly (normally I have stick-straight hair). But didn’t lose any hair. Stuff I’d lost before grew back THICK. 🙂

Yes, APL. It’s a rare one. I had a lot of arsenic, but I lost track of how many doses. I think more than 50 if include the ones in the hospital. It’s nice to know you didn’t lose your hair during maintenance. Thanks for the info.

I had two 25-dose cycles of arsenic with about a month off in between. The last week of the last cycle, I ended up with shingles on my butt and crotch- no dignity whatsoever- LOL 😀 With maintenance, I wish I’d had friends here who could help me keep up with basic apartment chores. The fatigue was significant- and the muscle/joint pain gradually built up- initially I didn’t have any. The only lasting stuff now is my sense of smell is VERY acute- and I find things stink when nobody else smells anything. I also don’t like garlic as much, which is a bummer. I can still tolerate garlic bread, but other stuff has to be really mild. I used to love garlic !! 🙂

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    A writer and cancer survivor chronicles her renewed dedication to art and words..


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