Feathers and Capes

Several weeks ago I met a woman named Janet, a friend of a friend who, like me, is a young mother with metastatic breast cancer. There are about a million other things that would likely have led us to friendship anyway, but unwanted intimate knowlege of the particular agonies, fears and triumphs of life with metastatic breast cancer is a pretty powerful common ground to share. 

Janet has been at this cancer thing for a few years longer than I have, and she really knows her way around.  I thought I was informed and self-advocating?  Next to Janet I look like a bit of a slacker. But the great thing is she’s a natural mentor, with an indomitable nurturing streak and a determination to empower other people.  She simply can’t stand the idea of cancer bullying anyone, and she does what she can to stop it from happening.

To me it seemed as though she appeared right out of the clear blue sky just when I most needed her, and so I started calling her my guardian angel.  It’s true: I write “Flap Flap” in the subject line of my e-mails to her, and I swear when she sits down at my kitchen counter for a chat I sometimes see tiny downy feathers floating through the beams of sunlight in my kitchen.  Probably not auras.

Anyway, back before we went to Detroit, Janet was at my side making sure I knew that there were lots of ways for me to keep actively fighting this cancer, even if I wasn’t yet enlisted in a clinical trial.  At a time when I felt abandoned by the hospital and health system, Janet offered practical, tangible things I could do, people I could contact, steps I could take so that I wouldn’t feel helpless; like a sitting duck in cancer’s crosshairs.

And one of the greatest gifts Janet gave me was to introduce me to Constantine.  He’s been one of Janet’s secret weapons in her own uphill journey with this beast, and if she’s a guardian angel, he’s a superhero.  She found him on the peer-to-peer cancer support site No Surrender where (under the web name “Edge”) he acts as resident medical researcher.   What that means is that Constantine responds to cancer patients’ questions about treatment options and myriad other confusing matters with clear summaries of relevant cancer research compiled from innumerable credible sources around the globe.  Constantine himself is not actually producing the research in question – which means he remains an impartial and unbiased third-party.  What he does is gather, evaluate and present findings to people who would otherwise be unable to find and make sense of the facts they need to make informed choices about their survival.  And Constantine does all this for free. 

So, while I haven’t actually seen the cape, I think it’s fair to say that there’s some pretty superhuman generosity of spirit at work here.  The sheer volume of information that he compiles is in itself overwhelming to contemplate, but that he then examines case-by-case requests for specific information is giving to a degree I can barely fathom.  And not just because I suck at research and statistics and would rather have my toenails pulled out than have to do it myself. Anyway, I’m deeply grateful to Constantine for his continued guidance, and always to Janet for taking me under her gigantic wings.

I’m telling you, angels and superheroes… they walk among us.

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Finding Clinical Trials: Tips For Navigating The Void

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.

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.