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. Not from my oncologist’s secretary who herself lost a daughter to breast cancer.
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.
Mar
15
My life is still reverberating from the act of talking and writing about the idea of my own death. Reverberating in a good way. It feels like something happened to the weight and girth of the subject; like I can get my arms around it and shift it to a more comfortable place, instead of just feeling crushed by it. When it was just in my head it was menacing and bullying – but when I talked about it with the people I love it turned out that my private hell was not mine alone. My fears became our shared fears (sorry about that) which allowed us to feel like we could at least face them a little better because we were facing them together. It was the equivalent of throwing fear in the dryer for a couple of hours: shrinkage ensued.
And then, there we were, my parents and I, sitting on my bed one night talking about it again for maybe the third time in as many days, and not even crying that time. Or, there I was, dropping it into a conversation almost casually: “…because if I die while Georgia is still really young I want to try to make sure she won’t turn it around and make it her own fault, the way kids think its their fault when their parents get divorced.” And there I was, yes, blogging about it to the world at large.
(Okay, seriously, blogging about it… Do you have any idea how naked I felt? It was like streaking through a stadium – although this little world of my blog actually seems far more intimate, so maybe it was more like streaking through a house party. But, still. I dare ya.)
It turns out that this unbroachable, unhappy, unfathomable topic is not so totally taboo after all. I’m not saying I’ll be bandying it about at cocktail parties (“Nice to meet you. I’m afraid my cancer is going to kill me and I won’t get to live out my beautiful little life. Have you tried the stuffed mushrooms?”) I’m just saying it’s more manageable than I thought it would be. And based on the feedback I’m getting, I’m beginning to think that talking about it has possibly made this nightmare a little less nightmarish for everyone else, too. Talking about it means that it’s okay for people to think about it; they’re not betraying me or failing to have enough hope if the idea of losing me enters their minds.
Anyway, it feels like I travelled a long, long way last week, from a place of fear and darkness to a place with at least enough sunlight to keep a small houseplant going. A huge part of it has to do with identifying a clinical trial and getting a plan for treatment underway. This is undeniably true. But I also attribute the return of my battle-scarred optimism about my chances of living to getting the subject of dying off my chest.
Who knew it would be so liberating? And can I continue to address it without becoming a freaky goth person? Because after the initial gruesome confrontation – after the first time I said the words out loud – it became easier and easier to talk about. Which meant that it was no longer necessary to try not to think about it. Which meant, paradoxically, that I and those around me thought about it less.
Like my friend Eden pointed out, it’s kind of a relief to be talking about it now when we don’t have to. Better we face it because we choose to and not because it’s being forced upon us.
In other words, I’m not dying – I’m just talking about it.
So anyway, back to being all alarmed and stunned at the gaping chasm in our medical system into which people with cancers that don’t respond to standard treatments fall…
My mom and I were talking about it last night and I was wondering if we are just feeling this incredulous because we’re so emotionally raw and psychologically freaked out. No, she reminded me, this just isn’t the way it’s done. Your GP doesn’t tell you to research which antibiotics to take to treat your strep throat. She identifies the best one for you. Yet there is no one anywhere in the system (at least not where I could find them) who’s job it is to research clinical trials on behalf of cancer patients. This is a resource that just doesn’t exist in one of the largest cancer research and care centres in the world, and the implications are frightening.
It’s true that this is the most unsupported I have felt since that day in March 2008 when I was told I had cancer. But even if the system as a whole has failed me there are many individuals who have not.
I was helped by my oncologist, my family doctor, my family and many friends, the hospital social worker, nurses, and several other people. But none of these people was helping me research clinical trials because it was their job to do so. It should be somebody’s job. Instead, it was my sister-in-law and some kind women at a breast cancer support organization called Willow (where she used to work) who eventually found the Montreal study. My sister-in-law. Honest to god, just think about that. And reach for the barf bag.
So, since I can’t fix the system from my laptop (at least not this afternoon) I think a summary of what we learned in the last couple of weeks is the best, most practical thing I can do for anyone else out there who might encounter a similar nightmarish tumble over the edge of the un-signposted cliff-face of cancer support:
1. You’re not breaking up with your oncologist. If your cancer doesn’t respond to standard treatments your oncologist no longer has anything with which to treat you. However, he/she is still there for you in the following capacities:
- to discuss ongoing, worsening or new symptoms and test them and try to treat them
- to connect you with oncologists responsible for any clinical trials available within your hospital network
- to review any clinical trials you find on your own and vet them for suitability
- to talk with other doctors, nurses or people on your medical team
- to process your applications for clinical trials (once you have identified them)
2. No harm in asking. Remember that the Hippocratic Oath begins, “First, do no harm” – and now proceed to shamelessly use that to your advantage. Even though it is not your oncologist’s job to do it, you can ask him/her to research clinical trials for you. These are busy people, and they are often barely able to keep up with the stuff that falls into their official scope of work, so perhaps they simply can’t make the time to help you. On the other hand, saying “no” when you know you can help a patient is probably not that easy. Ask.
3. Try these on for size, Doc. It is a good idea to ask doctors what they would do in your shoes. Once we had a shortlist, I asked my oncologist which clinical trial she would choose, medically speaking (ie: not taking into account geography, financial considerations, etc.) and she told me. That’s the one we’re pursuing right now. Many doctors will not be comfortable slipping into your metaphorical shoes, but you know what? Cancer isn’t comfortable. A good oncologist will at least make an effort.
4. What’s in it for you? Many hospitals have clinical trial centres. The objective at these trial clinics is to populate their studies with suitable patients. In other words, they aim to match patients to the studies that they have, and NOT to find the best possible clinical trial for a patient from all available clinical trials. They are only working with the trials that they currently have underway at their own clinic and they will select the trial most suitable for a patient from among those trials. Your job as a patient is to find out if participating in the trial offered will bring any real benefit to you (see Phase Matters, below.)
5. Phase matters. Trial Phases are important. This is what I learned about them:
Phase 1
- Phase 1 trials are for drugs or combinations of drugs that have had good lab results and are now being tested on humans.
- Phase 1 trials are designed to establish the correct and safe dose of the drug(s). This is done with groups of patients – the early groups get a lower dose, and later groups get a higher dose. If you get a low dose and it doesn’t affect your cancer you do NOT graduate to a higher dose; you are removed from the study.
- Phase 1 trials are effective against cancers in ONLY APPROXIMATELY 10-15% of cases. Personally, I don’t like those odds.
Phase 2
- In Phase 2 the dose has been established and the study is concerned with something called pharmacokinetics – how the drug is absorbed, processed and eliminated. Basically it’s all about figuring out what the side effects are.
- If you find a Phase 2 study, it has been effective enough in Phase 1 to graduate to the next level. Meaning it has worked at least enough to warrant more money being spent on it.
Phase 3
- Phase 3 studies are the final phase of testing before a drug goes to market. Essentially, the dose and side effects are established and now it’s about ironing out the kinks before lots of money will spent on marketing the drugs to hospitals as standard treatment. And you just know they don’t spend money on stuff unless it’s going to work for a lot of people.
- Phase 3 studies often involve multiple lines of treatment, meaning they are testing combinations of drugs to see how they work together. From a layman’s point of view, I like the idea of more drugs. Just say YES, YES, YES.
6. Take a number. Unfortunately it can take several weeks between identifying and beginning a clinical trial. In general, 4 weeks must have elapsed since your last treatment and you must meet a litany of study-specific criteria. You must also provide bloodwork, and other tests like CT scans, ECGs, MUGAs, etc. The study will also want to access your records and archival tissues. The good news? You can apply to multiple clinical trials at once, so that if one gets held up you at least have the option of beginning another. But cross-reference the eligibility requirements carefully (especially for specific drugs) to ensure that participation in any one study will not make you ineligible for another study.
7. Everyone wants a piece of you. If you apply to multiple studies simultaneously be aware that they may all try to access your archival tumour slides at the same time. These are samples of your disease cells that the hospital preserved at the time of biopsy and/or surgery – and your samples may be limited. You must be sure that you communicate to the archivist which study gets priority access, otherwise the one you really want to get into may be bumped by your back-up clinical trial just because the latter got there first.
8. Help, I need somebody. The research, the meetings, the phone calls, the follow-up, logistics, financial considerations, psychological implications, and oh by the way you’re supposed to be resting and rebuilding your immune system… It’s so frigging overwhelming. You can’t do it alone, and you don’t have to. I don’t care what your circumstances are, You. Are. Not. Alone. For one thing, if you’re reading this you have access to the internet, which means access to other people. Help is out there. Just contact your hospital social worker, or the Canadian Cancer Society, or one of your local cancer support agencies. They can help you find someone to advocate for you, support you, talk you through it – whatever you need. The nice thing about being hit with the cancer stick (the “nice” thing? did I just write that??) is that there is a LOT of support out there for us.
9. Smashing things works. I never knew how good it felt to get mad and break things, especially when it feels like there is literally nothing else you can do. I highly recommend you get yourself a Rage Box.
I’m sure I’ve missed some things but that’s all for now. This is the part where the resting and the rebuilding of the immune system happens: I’m taking a nap.
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 as a first language, 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.
Mar
08
As I mentioned in my last post, it appears that once you drop out of the realm of standard cancer treatments, the system isn’t designed to support you quite in the same way. I don’t think anyone knows exactly what to do with me. And it’s extremely unnerving.
This predicament is many-layered and messy, and it has occupied my time and energy for the last several days, but I’m not going to go into a lot of detail for two reasons:
1) I tried to write this post detailing exactly what happened (or didn’t) and it ended up being about 5 million words long, and
2) I don’t understand exactly what happened (or didn’t) and I don’t want to write anything unfair or untrue.
Suffice to say that as the fog of our initial shock lifted, we surveyed my situation and found that it was a total crash site. We needed a plan — knowing what the next steps would be and who was leading us through them was the key to getting my fear, despair and uncertainty under control. But we didn’t have a plan. We had a piece of paper with a web address (clinicaltrials.gov) and some search parameters written on it, but no real understanding of what comes next.
Admittedly, we were in shock when we heard the news that my cancer does not respond to standard treatments so it’s possible we were given information that just didn’t register, but we left the clinic without really knowing what to do and the result has been confusion, insecurity and a (possibly misplaced) sense of abandonment. And of course, a little rage.
However, we’ve since made some progress identifying clinical trials and other options, mostly by communicating with my oncologist and enlisting the help of friends, my hospital’s excellent social worker and my very caring and capable family doctor. I’m blessed with incredibly supportive people in my life who are good at networking and handy with the Internet. They’ve been researching, calling doctors and other people who might be able to help, and generally just sleuthing around to try to find promising programs and clinical trials that I might be eligible for. I can’t emphasize enough the importance of having people to advocate on your behalf when your head is spinning and you’re lurching unsteadily between terror, rage and optimism like an emotional bride of Frankenstein on newly cobbled-together legs.
Meanwhile I’ve made some changes where I can – every little thing counts and I decided that if there was going to be a pause in my treatment I may as well use it to detox from all the chemo and try to rebuild my immune system. Actually, my mother decided that and I agreed since it’s widely acknowledged that there’s no point in disagreeing with my mother when she has decided something. So I now take about three handfuls of vitamins and supplements a day and have finally and begrudgingly cut back on meat (fois gras is technically poultry,) alcohol (champagne is technically bottled happiness,) and sugar (I cannot be expected to give up chocolate entirely.)
Plus my friend Todd is a nutrition-fascist with a juicer and a lot of experience with cancer diets, so I spend my days knocking back his crazy cayenne- and tumeric-spiced leafy green/dark berry cancer-killing concoctions. They’re actually not as bad as they sound, and no, I have not spiked them with vodka. Yet.
In short, things are moving more or less in the direction of action, though I wouldn’t say I have an actual plan since we haven’t yet identified the clinical trial for which I’m going to apply.
I do have my eye on one promising experimental drug in particular, but there are no trials for it in Toronto, and while we’ve always said that we would find a way to go wherever the right treatment is, right at this minute I have no idea how we would manage to do that, logistically or financially. But I’m trying to just think about things one step at a time, and today’s step is to see what there might be for me in Toronto. This afternoon we’re meeting with the head of clinical trials at my affiliate hospital to see if we can match one of their current studies to my case. I’m somewhat optimistic – after all it is one of the top five cancer centres in the world – but my approach is to find the clinical trial that has the best chance of pushing this cancer back from whence it came, not to try to find the closest match of the most conveniently located trials available.
So once we have an idea of the most promising studies, wherever they may be, we need an informed review of them all and a fairly quick decision. Ideally I want to know what treatment I’m starting (and when and where) by the end of this week. That might sound like a tight turn-around but I’ve got a mean mother of a metastasis taking up a little more real estate in my body every single day and I need to do something about it before the whole neighbourhood goes ghetto. My rib continues to hurt, my cough is much worse, and my breathing is hampered by the pressure of the lymph nodes on my bronchial passageway. This cancer has become symptomatic – I can feel its progress – and quite apart from what that’s doing to me psychologically, it’s wearing me out physically.
I know I need rest and peace, but I won’t be getting either until I have a plan.
