Crowd-sourcing treatment options

To everyone who has offered to help me argue for compassionate-care access to a MEK-inhibitor, thank you. Less than 24 hours after my last post, a friend contacted someone she knows at Novartis on my behalf and he, in turn, is contacting Novartis Canada. Maybe this will be an unusually uncomplicated situation where the drug company generously grants me access to the drug without too much agitation. But if I need to agitate, it’s nice to know I have a lot of you willing to use your voices and work your connections.

This is a strange situation to be in. I really didn’t think I would run out of treatment options so soon, especially not at a time when I feel relatively well (other than the side effects of the ascites, or the side effects of having the ascites drained — I’m in a considerable amount of pain right now as my muscles and organs find their ways back home, but that’s expected and that’s also what narcotics are for). A lot of people have told me how brave I am for making the decision to stop treatment, but I don’t feel ownership of this decision; in many ways, the decision was made for me by a simple lack of options. I think I always thought that when I stopped treatment, it would be a decision I’d make after deciding the treatment was worse than the disease, after side effects became too much to tolerate. But I’m physically capable of tolerating more treatment right now, there just isn’t any treatment (easily) available to me. And I don’t count more cytotoxic chemotherapy — which has a poor performance record in treating low-grade ovarian cancer and, more importantly, a poor performance record in treating my low-grade ovarian cancer — as a viable treatment option.

I feel a bit lost.

I also feel sad, but mostly I feel angry — angry that there aren’t more options for people like me who run out of options long before they should, angry that the research machine doesn’t operate in such a way that individual doctors have more of a say in how to treat individual patients who don’t fit the mold of typical patient or typical research subject. I’m angry that I feel like I have to grovel and beg for some pills that maybe, just for awhile, could give me some stability in my health. I’m angry that so much of my head space is taken up by thinking about cancer, leaving little room for me to think or care about anything else. But I also feel blessed and privileged to have an extended community of people who are willing to help me through this, in various ways, however they can.

 

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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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6 Responses to Crowd-sourcing treatment options

  1. Connie says:

    You are such an elegant writer, to take a topic such as cancer and make it a somewhat pleasant read. Every though we haven’t met I’m proud to know that we share a genetic bond. All the best in the world. Feeling helpless that we’re unable to jump hoops.

  2. Catherine says:

    I just want you to know I’m here and I hear you on this. I’ll be watching online (twitter, that is) just in case you need another voice to shout.

  3. allisonmaed says:

    I am so, so, so sorry. And so sad. I know sometimes how little this helps, and sometimes the effect of these words, but I wish I could do something to take this all away. If there is anything at all I can do, please, let me know.

    I recall either you and I or during a group meeting once talking about the whole idea of “fighting” cancer. I think you’re so brave right now, not grasping at straws that do nothing just to “do something” and waiting for what will work. I pray the compassionate access comes through, and will be so utterly shocked if it doesn’t. I’m angry, too, that you have to jump through these hoops for something like this.

  4. Brenda says:

    Did you apply for provision of the drugs (from trial) through the Exceptional Access Program at ODB? It says it includes trial drugs previously used.

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