Found: A Clinical Trial! Also Found: Glimmer of Hope

Torturous as yesterday’s post was to write, I had to do it. Thanks to everyone who managed to pluck up the courage to reply to the unrepliable with comments and e-mails.  Apologies to everyone who felt paralytic or overwhelmed (I think that’s all of us) but this was only ever going to be a very bumpy ride. Lifejacket is under the seat and there’s a barf bag in the seat pocket in front of you – let’s hope we don’t need them too often.

For the moment, the sun is actually beginning to emerge from behind the dark clouds for a change: we have found and are applying for a clinical trial at last!  The study sounds promising — the most promising of all the experimental drug trials we were able to find — and there is a study site in Montreal, which isn’t totally ideal, but it could be worse, it could be much farther from home.  It could be outside Canada.  I’m not sure how swift the enrolment process will be or how we are going to handle the financials or logistics, but I’m already feeling so much better and more hopeful just knowing that there is a plan underway at last. 

It’s amazing how much difference a little glimmer of sunlight can make.  We are going to be doing something.  And it might actually work!!

Unfortunately, getting to this point has been excruciating and, as anyone who read yesterday’s post can attest, the process has forced me to face the grimmest realities.  Among them, and second in grimness only to confronting my own mortality, was the realization that our medical system completely fails in its support of patients with cancers that don’t respond to standard treatment.  

The transition from a supportive, comprehensive cancer-care system to the bleak no-man’s-land of post-standard-treatment was so sudden and jarring that it took me a while to realize that I had in fact been left to my own defenses.  Apparently the system just isn’t designed to take you any further than approved drugs and standard treatments, so if you have to go the non-standard route, you have to navigate it yourself. 

Meaning it is up to the patient to research and choose her own clinical trial.  The patient, who in the majority of cases does not have a medical degree.  The patient, who is reeling from the news that there are no more treatments for her.  The patient, who is probably grappling with gigantic questions like “Am I going to die?”  The patient, who hopefully speaks English fluently, knows her own medical history intimately and is handy with the Internet.

Aside from the basic impracticalities of this situation, it has the psychological effect of leaving the patient out in the cold.  It sends a message of hopelessness.  It says: your cancer is so bad, we’ve given up.

I believe I wasn’t totally abandoned only because I and my family reached out repeatedly for help to my oncologist, the hospital social worker, my amazing family doctor, a clinical trials nurse, and many, many other people.  I’m deeply grateful to all of them for their help, but I’m still stunned and alarmed at the totally unacceptable failure of a system I believed in and trusted with my life. 

But enough about all that for now. Really, I can be all stunned and alarmed later.  Right now I just want to enjoy the sunshine.

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9 Comments

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9 responses to “Found: A Clinical Trial! Also Found: Glimmer of Hope

  1. Diane

    Hoorah!!

    Love Diane and the whole family

  2. julie

    Great news Leanne!!! The wind has changed direction, spring is in the air and I just know that good things are going to happen!!
    Julie

  3. lisa

    Amazing news Leanne! I’m so happy that you’ve found your plan! Whew – here’s to new hope and sunshine. 🙂 xoL

  4. Katie

    First of all, love how you’ve tagged this post “barf bag” (among other things).

    So glad you’ve found yourself a plan and have something positive to focus on and work towards. Thanks for sharing this news and also for shedding a light on where things fall apart in our medical system. I’m also so glad you have such strong will and determination and that you have such a great team of advocates working for you.

  5. elaine

    So glad you’ve found something that seems promising for you. I was wondering if all hospitals are the same. I am a patient in the oncology/haematology department of a Toronto hospital (genetic blood disorder), and see the workings of the oncology “portion” as we all wait and are treated in the same area. In this hospital they have a “dedicated” nurse who deals with clinical trials, and only that, and based on her studies of the patient, she will assess their suitability for the various clinical trials available for their specific cancer. I thought that this approach was the norm, and didn’t realize that a patient might have to do that job for themselves 😦
    Good luck with everything on the road ahead for you, I’ll be following along as you travel this journey ……

  6. Leanne

    Yes – the metaphorical barf bag…I keep it handy these days!

    But it just feels so good to have a plan at last and to be taking steps towards getting me some treatment — experimental though it may be. As Tricia commented a while back, maybe “standard” was never meant to be for me anyway??

    ELAINE – Yes what you describe is the norm! There are clinical trial nurses at my hospital who do exactly what you describe and they are in fact very good at their jobs, but they only work with you once you are already on a clinical trial or during the process of selecting from the trials available at their particular hospital. At my hospital there is a trial clinic where they have up to 20 studies happening at any one time. The problem is that the objective is for the oncologists to find candidates who fit the parameters of the clinic’s trials — not for the oncologists to find a trial (among all trials available anywhere) that is right for the patient. That’s why I had to search on my own outside my hospital — because the right trials for me were not at my hospital. This is where the system doesn’t support a patient – there was no one designated to help me identify from all the hundreds of trials out there which ones were right for me.
    Anyway. I think I need to blog some more about this in more detail because it really is a scary situation and I wonder how many other people have found themselves slipping through this particular crack in the system. The learning curve of the past few weeks has been incredibly steep. Maybe if I transcribe everything we learned it would help others facing similar circumstances.
    l.

  7. Gwen

    As someone said previously, Leanne, your blog should be published so that other people can draw on your experiences, good and bad. I am so glad that you have found an appropriate clinical trial, even if it is in Montreal rather than close to home. Fingers and toes crossed that things progress smoothly.

  8. shannon

    Hi Leanne
    I have to read your blog in little chunks with breathing in between or I may spaz out (at work). Sending you so much love. You are seriously fierce woman.
    xo Shannon

  9. elaine

    Thanks so much for your reponse (in the midst of all the other things you’re doing!!). The way the system works when a patient reaches this stage is TOTALLY crazy then, and having read your newest post, I am in agreement with your mom — the doctor wouldn’t ask you to find and decide which antibiotic to use for strep; it makes NO sense to have a cancer patient have do that on their own. Thank goodness you have found something, and as noted in your next post, have been able to approach your oncologist for some feedback as to the most suitable for you. At least that’s something. Wishing you all the best,
    E

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