Chasing Trials South of the Border

Yesterday marked five weeks since I last received treatment for my cancer, thanks to low white blood cell counts preventing treatment in the weeks before my last CT scan.  Five whole weeks since the last time I was given anything at all with which to combat this disease.  They may say my cancer is unresponsive to treatment but something must have been making a difference, because in the past few weeks the cancer has noticeably advanced. I can literally feel it advancing. There are lumps in places there never were before, and the old, familiar (once disappeared!) lump in my neck has grown to the size of a ping pong ball.  Plus, my breathing has become a bit more laboured, and my coughing fits are sometimes so violent and unrelenting that I end up in tears.

To have the little flickering light of opportunity that the Montreal drug trial represented snuffed out at a time like this was utterly devastating.  Universe, you are a turd-head.  I ask it again: Why do Nazi war criminals and child molesters get to die of old age?  Who’s in charge here? And don’t give me that “mysterious ways” crap.  Come over here and watch me try to catch my breath long enough to read my kid a bedtime story and then talk to me about mysterious ways. It’s like the universe is being run by a schoolyard bully who is high on acid and has grown weary of torturing cats.

Alas, crying “Not fair! Not fair!” isn’t going to get me anywhere. My husband and I wiped our tired eyes and dusted ourselves off.  Time to get back on our feet, yet again.  Time to act.

So yesterday we went in to see my oncologist, fully prepared to coerce, plead, blackmail or otherwise drag her into a more active role in our desperate pursuit of a drug trial.  Instead, we were pleasantly surprised to find that she was instructing us on the need to take immediate action and to move ahead with applications for all potential TDM1 clinical trials simultaneously. Her sense of urgency, it turns out, is equal to our own. Perhaps greater — I was almost alarmed at her no-time-to-lose approach.   

In addition to the Great Trial Chase, we covered every physical concern I have, from the ping pong ball to the coughing fits. She made suggestions, proposed options, and was sympathetic but serious.   

In short, I felt in every important way that I’m still her patient, and that she is committed to giving me the best care she can, even though this clinical trial quagmire is relatively uncharted territory for her too.  She is “very busy” it’s true, but she is not the problem in this equation.  If I point my finger (and I do) it’s not at her. I’m pointing it at the system’s treacherous gap, the one into which I have fallen and am struggling to clamber out of.   

Anyway, while feeling good about my oncologist is important, what really matters is that we are once again moving toward doing something to push back against this cancer: We left with the enrollment process underway for three different TDM1 trials at six different sites in the U.S — several of which we have unfortunately already heard are closed.  It’s a nail-biting time, trying to get into these trials. And while we have always said that what matters is that I get the right drugs, and not where I get them, the logistics and finances of pursuing treatment in the States are a bit daunting.  But we’ll figure something out. First, I need to be accepted into a trial somewhere, then we’ll figure out how to get me there.  We have to.  What choice do we have?

I really believe TDM1 is promising, and right now all my energy is being directed at getting into one of these trials. I’ve literally been at it since I woke up this morning.  I forgot to eat.  I forgot to take my vitamins. I ran a bath and let it get cold.  All that matters is getting into one of these trials.  Okay, eating matters too.

But will it work?  Something has to work.  Last week, caught between the nightmarish fear of my own death and clinging to the faint glimmer of hope represented by the Montreal clinical trial, I tearfully asked my friend Eden, “But what if we go through all of this and the clinical trial doesn’t work?”

And she said, “I know. But what if it does?”

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8 Comments

Filed under Living with Breast Cancer

8 responses to “Chasing Trials South of the Border

  1. Katie Osler

    I LOVE your oncologist (again, after cursing her via her nurse)! GO,GO,GO,GO! Nothing to lose, all to gain, maybe some avastin in the meanwhile?

  2. Carol W.

    Effing cancer. Effing mets. Effing closed clinical trials. Don’t let closed doors stop you. Keep pounding on their doors. In the meantime, you must also keep up your strength. Eat a great meal. Sit outside with your face turned towards the sunshine. Enjoy…something…

    I’m proud of you. Keep going! And, good for your oncologist — nice come back! xoxo

    P.S. Katie mentioned avastin. What about more herceptin until another plan is put in place?

  3. leanne coppen

    My lovely & smart ladies,
    I too had the thought about going back to one of the drugs that at least showed some ability to shrink / stabilize my bumps — even if there was evidence of progression elsewhere — and I still think its a good idea. Problem is, in order to qualify for a clinical trial subjects (that’s me) have to be treatment-free for a minimum of 4 weeks. So if I started something now and then got accepted into one of these trials, I would have to stop the treatment and wait 4 weeks, during which time they may have found another candidate.
    Evidently, the clinical trial system is in no way designed with the best interests of the patient in mind. Unfortunately for many of us our other options are limited.
    The other problem is that OHIP might not approve me to go back on a drug I have been previously taken off because the system doesn’t fund drugs that “aren’t working.” What they mean is drugs that “aren’t working enough.” I can apply to my husband’s private insurance benefits plan to see if they would step in, but as I said at the moment I have to focus on the trials… And the cancer keeps advancing.
    No matter. We won’t be daunted. Please KEEP THE GOOD IDEAS COMING. I cannot believe the brain power and kindness I’ve got backing me. I just keep telling myself: THERE HAS TO BE A WAY. SOMETHING HAS TO WORK. It just has to.
    Thank-you friends,
    l.

  4. Katie

    I wish I had some great idea or magic bullet to share with you. All I can do is let you know that my fingers and toes are crossed for you to get into one of these trials. And to assure you that my ice pick is still standing by.

  5. Doona

    Hey, Leanne, I’ve been sending good vibes your way. Hopefully they have landed softly on your shoulders. Hang in there.

  6. Katie Osler

    One more thought. IFFFFFF for some reason, you find the wait for a trial too long, and IFFFFF Cancer Care Ontario has decided that your response is not profound enough, there is the facility on University Ave (Provis, I think), where a patient can go and get the drugs that your oncologist would like to see you on, but the system won’t fund anymore. I think the wrinkle is that you then can no longer be in the care of your oncologist – or at least that was the explanation when it came up for me. Maybe worth researching in tandem with the trial applications?

  7. Andrea P

    Hi Leanne,

    I have an old friend who is a breast cancer surgeon (formerly at Sunnybrook) and I asked her if she knew of any trials that may be open. Apparently there is one at Sunnybrook. My friend can put in a call early next week to make the intro if you are interested. I’ll send the details to Axel’s FB.
    Here’s hoping it works out!

  8. Diane

    Darling, I am thinking about you constantly.
    Love Diane

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