It’s like Christmas over here

Dr. Siu wanted to see me when I came back for my four-hour-post-infusion blood draw. The 18th floor was dark and empty at 6 p.m. Everyone had left except for the nurse who was drawing my blood and Dr. Siu, who is notorious for rarely leaving the hospital. I was expecting her to just drop in to see how I was doing since she wasn’t here last week and she knew I’d had to miss an infusion. But she showed up with the results of the molecular profiling of my tumor. You have a mutation, she said. Actually, you have two.

I have a KRAS-G12V mutation and an NRAS-Q61R mutation. The NRAS mutation, which isn’t often seen in ovarian cancer, is more pronounced than the KRAS mutation. Thirty-six percent of KRAS mutations in ovarian cancer are of the G12V variety. I don’t know the significance of this because the researchers don’t even know the significance of this. There are no current anti-KRAS therapies available, but that’s okay.

Dr. Siu turned over the paper with my results on it. She drew a large circle with a smaller on in between. She wrote down letters beside a line connecting the inner circle to the outer circle. From the inner circle to the outer, MEK, RAF, RAS, ending with EGFR. EGFR is epidermal growth factor receptor, which is where my mutations are. It’s not linear, Dr. Siu said, but the RAS mutations are a higher level, then you have RAF then MEK, and there’s the nucleus of the cell. We don’t have any trials for RAS mutations but because the MEK expression is lower, we can inhibit that and it should turn off the RAS from below. And there are lots of MEK trials. But we won’t switch you yet, we’ll keep you on the AMG — it has nothing to do with EGFR, it’s a whole other thing. I said that was fine, but it was nice to know what my next option might be. We were both pretty excited about the mutation.

We talked more about the genetic profiling, and what samples were looked at. For the IMPACT study, they usually try to look at the most recent samples. For some reason, my most recent samples weren’t used, instead my original tumor from 2003 was sent to be analyzed. I asked about the chance of new mutations since then and she said there is a new branch of the IMPACT study called the REACT study or something where they profile samples from different time periods. They have 400 patients signed up for IMPACT now and until recently, there was only one of the machines that they need to use to analyse the tissue. The hospital just bought a second. When the backlog is managed, they will start looking at other samples for those of us who have multiple sample dates (as an example, I have samples from three different time periods).

Dr. Siu asked if I had my CA-125 tested that day. Yes, I said, but Christine wasn’t sure if it would come back before the end of the day. Dr. Siu hmm’d and said probably not, but I’m sure you want to know what the results are if they are in, right? Maybe I should check the computer and see for you. She was more excited about knowing the results of my tumor marker than I was.

She couldn’t get the computer in the room working and was going to go access another when the nurse figured out the problem. She pulled up my file. It’s the same, she said. That’s great. You were doubling, so you should have been at 140 at least. It’s still 70. 

So after only three infusions, it looks like the tumor growth is stabilized. I’ll have a CT scan in a few weeks to confirm tumor stability or regression.

I came home and started doing some research on what I learned today. I came across a recently published study about MEK inhibitors in patients with my type of cancer/mutation. There was an 81% response rate which translated as stability and outright remission in some of the women. The significance of this on my future treatment options is enormous. This is so big I’m just saying fuck it to tempering my expectations and looking for the worst-case scenario so I don’t get my hopes up too high.  This is good news. I feel like I’ve been granted an 11th-hour pardon.

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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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7 Responses to It’s like Christmas over here

  1. Michelle says:

    That is great news. Be happy.

  2. Dee says:

    This is Good news. I don’t recall what you are taking now but Erbitux / cetuximab is a KRAS inhibitor used for lung cancer.

  3. Wordgirl says:

    Just fantastic!

  4. malawson says:

    Alicia, that’s outstanding!! Continued prayers for you. Godspeed and Peace in your recovery.

  5. oh wow – good for you – good for all of us !! Just curious – how long did it take to get your genetic info back? I’ve not been tested yet but will be soon… bravo, and as always, thanks for your words!

  6. It took about two months to get the tumor profiling results back. I had regular genetic testing (for BRCA, etc.) with a geneticist back in 2005 — I don’t know how long it took to get that stuff back because I wasn’t really interested in the info so only actually got the final results this year (negative, which is what I had been told to expect when I went in for counseling).

    I think the time frame for the molecular/genetic profiling is dependent on a few things — how easy it is to access your tumor samples, where the samples have to be sent for profiling (PMH has the machines to do it on site, so that speeds things up a bit), and what the backlog is like for other samples.

  7. Mir_B says:

    Stability is fabulous news. Enjoy enjoy enjoy having good news. My scans in September showed stability, and I felt perfectly floaty for weeks.

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