Spending time with science

I’ve been doing a lot of research over the past couple of weeks, for a couple different reasons. The first is that since the pneumonia, I’ve been on a lower dose of the MEK inhibitor (the drug that was shrinking my tumors). And while it is keeping me stable for now, it is too low a dose to really be therapeutic and now that I know that I respond to MEK inhibitors, stability isn’t really enough. I want more. But there aren’t a lot of trials running with MEK inhibitors, particularly if I want to stay in Canada, and many of them won’t allow you in the trial if you’ve already been treated with a MEK inhibitor. So I’ve been looking at upcoming trials, trying to figure out which ones I am eligible for and when, approximately, they begin recruiting. I’d rather not switch trials — it would mean an increase in hospital visits, which have finally started tapering off — but if it means I can get a higher dose of the MEK inhibitor, I’m willing to switch.

The other reason I’ve been researching is that one of my oncologist is presenting research at the upcoming American Society of Clinical Oncology (ASCO) meeting and I’ve been asked to be a patient liaison to the media (because I’m involved in the study he is presenting on). I’m pretty terrible at explaining mutations and their importance and such, so I’ve been trying to track down data and information on my mutations (to the best of my ability).

Researching your cancer is often terrifying. There are tons of studies published that talk about failed experimental therapies or give bleak prognosis outcomes. Having a rare cancer, made even more rare because it is a recurrence, means that there isn’t a lot of data readily available. You really have to dig. Most of my information about low-grade ovarian cancer has been anecdotal — the only other person I know who has low-grade OC that’s recurred is an older woman who’s had it for eight or nine years now. My oncologists have told me of their low-grade patients who have been dealing with the disease for over a decade now. But I’ve never really come across data drawn from a cross-section of low-grade ovarian cancer patients.

I finally did. And I learned the median survival rate is something like nine years. Later recurrences, like mine, are linked to improved prognosis. Having a KRAS mutation, like I have, is also linked to a better prognosis than those who have low-grade ovarian cancer without this mutation. In reviewing some of the abstracts of other studies that will be presented at the ASCO 2013 conference, I learned that NRAS mutations — which I also have, and which there is no information on in reference to low-grade OC — make it so vascular endothelial growth factor (VEGF) inhibitors don’t work. The first trial I was on was for a VEGF inhibitor. My mutation explains why it didn’t work for me.

And the information keeps coming in. One study I read stated that targeted therapies, like MEK inhibitors, didn’t seem to have the same problem as conventional chemotherapies in that patients are less likely to become resistant to the drugs, unlike standard therapy in which the cancer will always eventually become resistant.

It’s hard to know what to do with all this. It makes me feel better, more confident in my treatment in some ways. I feel less pressured for time. When I look at the advances in the last two years alone, I can’t help but feel like I have time. Time for researchers to figure out the exact significance of my mutations. Time for them to develop new drugs or find old drugs that work to manage my disease.

The last nine months have been hard. These are the months I’ve been in clinical trials, and these trials have been hard on me. The amount of acute illness that I’ve dealt with over this time is significant. It’s made me wary and not entirely believing of the alleged lower side effect profiles of the new drugs. But then I have to remind myself that so much of that illness wasn’t from the drugs at all. Since having my infected port removed, I’ve felt good. Despite being tired and occasionally nauseated, I feel better than I have at any point in time during any treatment I’ve had over the last three years.

And the access to information keeps growing. Websites are popping up everywhere where patients can share their molecular data and treatment history to search for possible treatment by mutation rather than by cancer site. Another site aggregates all the trials in the world based on mutations so you can see who is conducting what and where, making it easier to find treatment options outside your home country if needed. It’s more than I could have imagined three years ago when I first found out about my recurrence and learned that treatment options hadn’t changed in a decade.

I don’t know what to think. I am loath to be optimistic because my hopes have been dashed so many times before. But it doesn’t seem right to be dour and Eeyore-esque. I guess what I need right now is faith in science, patience, and the belief that more answers will come soon.

I’ll try.



About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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3 Responses to Spending time with science

  1. rvanhalm says:

    Your work on the research is incredible considering your non-medical background. Keep up the great work. You’re inspiring the rest of us. (There’s a woman in my support group with low grade OVCA. Her recurrence has just been determined although she’s been complaining of aches for a couple of years. A second opinion got her a scan and … there it was.) Hang in there!

  2. Amanda says:

    I’ve been reading your blog for a while but since you mentioned you hadn’t known anyone who recurred with low grade cancer, I thought I’d comment.
    I was diagnosed in 2009 with low grade ovarian cancer. Did the standard treatment. 1 year after finishing treatments I recurred again, still low grade. Did another year of treatments and now I’ve been cancer free for a year. Diagnosed at age 22 and just turned 26, yay!
    Anyway, I’m hoping that I’m really done forever with this crap, but I know there is a very real possibility that I will be dealing with this again. I was wondering if you could send me some links to information about the KRAS mutation. I had never heard about this and would like to know a little more.

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