Stop The Ride, I Want to Get Off

My oncologist’s secretary just called me to tell me that the Montreal study is closed. 

I’m flabbergasted and enraged. Enragergasted. Flabberaged.

First of all, it took them a week to find that out??  When did this trial close?  Please don’t tell me it closed within the last few weeks.  Please don’t tell me that someone with medical experience could have tracked it down in time and started the application process for me in the past few weeks while I was flailing around desperately trying to navigate clinical trial research on my own.

On the phone with my oncologist’s secretary I skipped over all that and jumped right to the point: “What do we do now?”  My question was answered not with a list of options or an outline of an action plan, but with another question. The ball was thrown right back at me: “Have you tried looking at any trials in the States?”

Yes of course we have, and what’s more, they already know this because I provided them with a document outlining the shortlisted clinical trials that we found. I can accept that they are so overrun that they don’t know my case by heart. What scares me is that they haven’t even checked my file before calling me. 

Calmly, I answered the question.  I didn’t cry or shout the entire time I was having this ridiculous, unbelievable, horrific conversation.  I only lost control once, when I raised my voice a little, asking that my doctor and her secretary treat my situation with the urgency it requires. “It’s my life we’re talking about here.  Please, I just need you and Dr. XX to take it a little more seriously, to work a little harder for me.”  

She said “We’re trying.  We’re very busy…”

I almost laughed.  Really. It would be funny if it weren’t so scary.  Because you can tell me that you are very busy if your job is, let’s say, filing lawsuits, or repairing bicycles.  You can get backlogged or let things pile up without too much risk to human life.  But telling me that you’re too busy to help me survive is not acceptable. Not in the breast clinic of one of the biggest cancer centres in the world.

It makes no sense.  It is a nightmare. It’s a horrible joke. It’s my life.

So I asked for three things: 

1) Research whether there are ANY open TDM1 trials in Canada for which I might be eligible.

2) If there are none, look at our shortlist of clinical trials at U.S. sites and tell us which one to pursue, since we are not equipped to make an informed decision on our own.

3) Tell me if Health Canada’s Special Access Program would apply in this case — in other words, can I get TDM1 on compassionate grounds?

I should have asked for one more thing:

4) Stop the ride, I want to get off.

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20 Comments

Filed under Living with Breast Cancer

20 responses to “Stop The Ride, I Want to Get Off

  1. Katie Osler

    Leanne, I was out with Scott Pielsticker last week and he mentioned your blog. I have spent the intervening time digesting what it is you have been through, and continue to go through. As a survivor, and a massive Mary Sue Douglas fan, there were many times in 2007 that I wished she were here to sit down with me, and give me the strength to get through. Eventually, I came up with this thought: we are taught in physics that energy cannot be destroyed, it can only be changed into different forms. And people are, at their essence, energy. So, Mary Sue (and our other loved ones who are no longer visible) is still with us, and her energy, and love encompass us and if anything, we are even more blessed because she is now able to be with all of us, always, cheering us on in all of our lives. It is probably the only profound thought I’ve ever had, so if it makes no sense, please disregard entirely. I will leave you with a giggle, and a #11 for what not to say to someone who has cancer. No joking, someone once said “You must feel like you’ve dodged a bullet”. Exqueese me? Did you honestly just say that? Surgery, chemo and rads, and I dodged an effing bullet – how so? People can be such fun – I have dined out on that for 3 years 🙂 Hope today is worthy of a lovely sauvignon blanc in the garden and sunshine. Sending you a sun load of healing thoughts, Katie

  2. Scott

    Oh, Fart!

    Not the exact word that first springs to mind but it is the one that can be spelled out here in full…the smell works for the situation too.

    I do so hope and pray for a positive outcome

    Positive thoughts, love and prayers for you as always

    Scott

  3. Duckie

    I can only just imagine what it must have felt like to have had that call, even then I don’t really want to let that feeling in.

    As you know, there are a number of trials of TDM1 recruiting at the moment (http://clinicaltrials.gov/ct2/results?term=breast+cancer+and+TDM1&recr=Open), do you think you could apply to them, if you haven’t already?

    I highlight 2 below as they’re both recruiting in Boston, which seems to be the closest major centre in the US to you.

    One, a Phase II (http://clinicaltrials.gov/ct2/show/NCT00928330). You need to have had Herceptin before, which you have right? They’re combining it with another new class of drug called a PI3K inhibitor from the same company (Roche/ Genentech).

    Here’s another Phase IIb study recruiting in Boston (http://clinicaltrials.gov/ct2/show/NCT00951665)

    If you want help researching this, let me know, I’m only ever an email away from you and I’ll do whatever I can for you.

  4. Anne Marie

    A lot of stranger-friends in the blogosphere are rooting for you! I’m going to spend time looking for TDMI trials. I’ll pass on anything I find…

    Take care,
    Anne Marie

  5. Lisa B.

    I have no words. Will post on FB and Tweet about it. Wish there was something more I could do. Virtual wishes seem so, well, virtual.

  6. Michele Bosc

    This may be something you already know but just incase: http://www.ncic.com will list all the clinical trials in Canada. Nactional Cancer Institute of Canada. NCI will give you all the ones in the US. Good luck.

  7. Katie

    Leanne, I read this at my desk this morning, alone in the office, and I DID yell the word that Scott in the post above wanted to put in his comment. I read your blog religiously and send you warm wishes, crossed fingers and all other good things every day.

  8. Tami

    Another stranger reading your blog here, and you may already know this information – but there are several women on Breastcancer.org who are in TDM1 trials or waiting to get in – one is in Ottawa, she had to wait because they found a brain met that had to be treated first, and the other that comes to mind is in Michigan. Perhaps you could reach out to them, for any info they might have regarding TDM1 trials. If you search the Stage IV forum you will find their posts, their names are KonaKat and Fitztwins. They are both a wealth of information. Wishing you all the best.

  9. Keri-Lyn

    I work in a Family Health Unit, and we recently had a patient qualify for TDM1 trials – she was treated in the U.S. for her breast cancer. Her family doc, my wise and beloved colleague, told her to keep shouting, even if you’re hoarse, because someone, somewhere, will listen and passive will become active.” So, as a layperson who can really offer nothing more than that, except my support in general, keep shouting, Leanne, until that squeaky cough is heard by everyone, everywhere, and you deservedly see some action.

  10. Katie Osler

    Leanne, I was also going to suggest the breastcancer.org site. There are boards specifically for Stage 4 patients, and a wealth of information there – someone might know of a trial with space. I also feel I should apologize for my post yesterday – I was trying to say that Mary Sue was with you in spirit, helping you shout ’til you’re hoarse, but I don’t think it came across that way. She IS there, cheering for you, and hugging you, and quietly whispering in your ear – keep going, keep trying, be the squeaky wheel, who gives a S*%#t if you irritate the *&%@)^ primary care nurse.

  11. Andrew Giles

    Not sure if this helps, but this study looks to be currently recruiting participants. Check http://clinicaltrials.gov/ct2/show/NCT00951665

  12. Andrew Giles

    Again, forgive me if I’m incorrect, but there looks to be 5 US Studies currently seeking volunteers. Check http://clinicaltrials.gov/ct2/results?term=TDM1+trials&recr=Open

  13. Nicole

    Hi,

    This article was passed along to me via Facebook and I can not even begin got imagine your frustration.

    I have a network of survivors and people who have worked in many support roles within various organizations and so I put it out there to them. I received this site as a suggestion to start looking, I hope it may help.

    rsny.org

    I will continue to send you information as it is sent to me.

    I am sending care and positive energy your way. I wish you all the best and a path to recovery and a life of happiness.

    Nicole

  14. Andrew Giles

    …and with regards to your unfortunate dealings with the inner workings of our Canadian Healthcare system, I’m so sorry you had to go through these indignities Leanne. You deserve better. We all deserve better. If there’s anything I can do L, please ask.

    Also, if it would offer you some peace, please feel free to email me the Physician(s) and/or Facility name- as I would be happy to address this formally (if so inclined of course). 😉

  15. Lisa D.

    Leanne:

    What a roller coaster ride you have been on in the last couple of weeks. I am hoping and praying that you get access to the TDM1 drug.

    I would also like to sincerely thank you for your previous post about navigating the world of cancer treatment once all standard therapies have been exhausted. I am Stage IV as well, and I had no idea that our wonderful Canadian health care system completely comes to a stop at this point. I guess I figured when I had used up all of the available drugs, my oncologist would simply say, “Okay, here are all the trials I think you should do.” Thank you for taking the time to share this information, especially during what is such a difficult time for you. I now know what I face in the future, and I can prepare for it. Your strength and courage to share with others your journey through this terrible disease is incredible.

    As Tami mentioned above, breastcancer.org is a wealth of information, so it might be worth a try to search there (although I am sure you already know this). Thinking of you,

    Lisa

  16. Leanne

    THANKS EVERYONE! What a lot of good resources! Some I knew about, some I didn’t — all are appreciated. As I said to my hospital social worker today, blogging about all this means that I hear about a lot of things that might otherwise elude me, and hopefully I’m not the only one who benefits!

    We are on the road to enrollment in TDM1 trials in the U.S. — Mister Giller the one you cite above is on the list of three we found with the help of my oncologist. We are waiting to hear if it is still open since its Canadian counterpart has closed.

    Full blog post forthcoming — just wanted to say a big thank-you to all of you for the help that came pouring in following this post. There’s so much to be said just for the value of feeling supported through this, but to get practical help on top of that…WHAT THE HELL DID PEOPLE DO BEFORE THE INTERNET??

    Oh and KATIE pleeeze don’t apologize — I feel Mary Sue’s presence or energy or love or whatever you want to call it. I really do — I have no idea how, but it’s there. I hope my own daughter will feel mine after I’m gone too. Not that I’m planning on going anywhere in the immediate future. Except out to dinner with my dashing French husband. Screw you, cancer!

    Thanks everyone.
    l.

  17. Andrew Giles

    Leanne,
    PLEASE contact me if you have any problems with getting into the US trials. I will make some calls if you get any push-back. Promise.
    A

  18. Jen Thomson

    I don’t know how you possibly put this degree of frustration/anger into words…
    My friend here in Chicago is married to an Oncologist – I asked her if he had any resources regarding clinical trials here – I will post a comment if he comes back with something. Hang on.
    Jen

  19. Arlene Redmond

    Infuriating. Frightening. And some of the words mentioned above. Mainly I am speechless. I am so sorry you have been treated this way by the medical office. It makes me very angry.

  20. Gwen

    Leanne, I can only repeat what the other posters have said. No, I can’t. I can also say this: it is disgraceful that you have been essentially abandoned by the health care system. I know it’s overloaded. I know there is an shortage of $$, inadequate numbers of staff, and insufficient other resources. However, abandoning people who have “failed” (great way to put the onus on the patient, right?) standard treatment is nothing short of cruel. You are right. There is a big gap there that needs to be filled. I am so glad you have had so much good information from other posters, and that you have leads on another trial. I hope that you have good news about it and that it proceeds smoothly for you.

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