Unstoppable Dr. Detroit

Just before the weekend I heard from Dr. Detroit and according to her, there has been a delay in my starting treatment with the Karmanos Centre clinical trial because “we are still waiting for the Canadian government to approve your treatment here.”

Um, yeah… Approval from the Canadian government…for my treatment in the U.S.  …Pardon me?

First of all, that’s just what you need when you’re desperately awaiting life-saving treatment: a gargantuan bureaucratic behemoth squatting in your path and waylaying the approval process.  Second, what in the holy bejeesus could the Canadian government be approving, since we are paying for every penny of my treatment ourselves?  And which branch of the government?  And at which level – Provincial?  Federal?

I shared the e-mail with my family and we did a lot of looking at each other and blinking in utter confusion at the total absurdity of the Canadian government’s involvement.  As far as I’m concerned my government lost its say in my treatment right around the time I was told that they couldn’t do anything more for me and I had better look into clinical trials for experimental treatment options.  Which of course I did.  And now they’re holding me up?

We’re all totally stymied, and I vow to get to the bottom of this Big Brother-esque mystery just as soon as I can devote some energy to it.  At the moment however, my focus has to be on regaining my strength and appetite after a weekend of adjusting to the new painkillahs.

Actually, the main reason I’m not banging down doors for answers (other than having no idea upon which doors to bang) is that I don’t have to; Dr. Detroit went on to say that as an alternative to the delay they are opening a compassionate use trial for me that is monotherapy (which is how the drug will be FDA approved in the U.S.) She says they anticipate it opening up in a few weeks.

Okay so how’s that for a doctor?  Something gets in her way – something like, oh I don’t know… a government – and she just goes around it to come up with another solution to get me the treatment I need in a timely manner!  And not just the treatment I need, but the dose at which it will be approved when it goes to market.  In other words, the dose that worked for people in clinical trials! She’s like the superhero of oncologists – she should be wearing a cape, not a lab coat.

We can’t celebrate yet — I still need to hear that they have been successful in opening the monotherapy compassionate trial, and of course that my government hasn’t stopped up the process any further.  And until then, I need to do my part and stay in good enough health to make it to the new start date in a few weeks.  I think I can do this.  I have to. 

Hold on Detroit, I’m coming!

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Dr. Detroit!

We love Detroit!

Well, maybe not the urban wasteland / don’t-take-a-wrong-turn-sucka city proper – but we definitely love the gleaming, amazing Karmanos Cancer Center, stuck incongruously in the heart of it.  And we especially love the brilliant clinical trial leader there, who shall hereafter be referred to as Dr. Detroit.

Dr. Detroit is world-renowned for her work in testing new cancer drugs. She’s been at Karmanos for 21 years and in that time has brought so many important anti-cancer drugs to market that she’s become a bit of a cancer legend.  In person, she’s a thorough, straight-talking, personable, smart, get-it-done whirlwind of a woman – but what we liked best is that she seems completely unafraid to give us hope.  Specifically, hope that this drug will work for me. Hope that I might live.  She did it in part by saying that for HER2+ cancer, TDM1 is the best drug she has ever worked with. 

This is the first time we can remember sitting in the presence of an oncologist who will use a word stronger than “interesting” to describe a trial drug and its potential benefit.  And frankly, I really would like a drug to do more than “interest” me, especially if we are going to have to travel several hundred miles every week and raise several tens of thousands of dollars to get it.

Anyway, there we were, listening to Dr. Detroit and feeling the unfamiliar buoyancy of hope for the first time in forever. Amazingly, I was also feeling more energetic than I had in weeks, which was unexpected, especially after the long drive Wednesday (we’ll be taking the train next time.) In fact I’d been totally exhausted when we checked into our room on the hospital campus the evening before, and had a low fever as I got into a hot bath while my husband went out to forage for food.  (Let’s just note here that driving around downtown Detroit after dark with Ontario plates and no idea where he’s going is not what I would describe as typical of his intelligence and good judgment, but he did make it back in one piece.) By the time he came back, I was feeling better, sitting up reading in bed, and he remarked that I had colour in my cheeks again and wasn’t coughing continuously.  “I don’t want to jinx anything,” he said, “But do you think the chemo could already be working?”

In the morning, I was even better.  Neither of us could believe that I was able to walk across the hospital grounds to the clinic, and then sit, eat, talk, and just generally function at an almost normal level.  It was a surprise to both of us; hard to believe I was the same woman who, four days earlier, couldn’t get out of bed to get a glass of water. Mind you, four weeks earlier I could go for long walks and chase pigeons through the park with my kid…  Anyway, we were just happy that I didn’t seem quite so ready for the Final Curtain anymore.

So when Dr. Detroit remarked that I presented a pretty darn healthy picture for someone whose records note that her oncologist had been recommending palliative care, we confessed that this returned energy was new.  “Hm,” she said, “Maybe the vinorelbine is already working.”  (More hope!)  It turns out that far from disqualifying me from the trial, she wholly endorses me getting chemo and has encouraged me to continue to get it weekly, if possible, until the 21-day cut-off point.

So, if all goes well, I can begin the trial in May. I will get TDM1 plus two other drugs, pertuzumab and Taxol.  They’re being tested in combination for the first time together, which is why this is called a Phase 1 trial, but the drugs themselves are not Phase 1 drugs – they’ve reached far beyond that – and I am optimistic that they can really help me.  

What if it works?  I think it really could.  Really, I do, because Dr. Detroit does, and she’s been around the cancer block a few times.

But first, all must go well. Meaning I have to get through at least five more weeks without my health deteriorating any further, I have to navigate the not inconsiderable administrative hurdles of getting my records transferred to Karmanos, I have to continue to get vinorelbine (and even lobby to get an extra dose, if possible) and I have to raise massive amounts of money.

But most important of all – and here, ladies and gentlemen, is the catch – there can be no brain metastases. Because if there is, I am not eligible for the trial. Period.  

Or, as I like to say, if there is cancer in the brain, I can’t get on the train.

So, even though the CT scan was clear, everything now depends on an MRI of my brain. I believe I can get through all the other challenges, but this one thing I just can’t control.  Why is there an aura in my right eye? Go away, damn aura. Out damn spot!   Becasue having just found hope again, I can’t stand the idea of losing it so soon.

The Narrow

Still exhausted and weak but now capable of being vertical for short periods. Thank-you, thank-you, thank-you — your words carried me and comforted me.  As did my mother, my dearest friends, my family, and my incredibly incredible husband.  Everyone managed to hold me together, distract Georgia, feed and water me (despite my protests), prop me up, tuck me in and generally get me through.  Their care and your messages reached me through the fog of fear and pain and reminded me that when I fall I can stay down for a while.  And then I can come back up swinging. I’m not lacing up my boxing gloves just yet, but at least I’m eyeing the ring again.

My husband on the other hand seems to be in full swing.  Today he woke up and left the house early for an unscheduled confab with my oncologist.  By 10:30 I was having a CT scan of my brain, by noon, bloodwork, and a couple hours later, chemo. It’s the one we were holding in reserve, vinorelbine, and my oncologist made special arrangements to get it administered today so that I can still go to Detroit tomorrow.  And I am going to Detroit tomorrow, oh yes I am. If I have to be carried into the car and out again at the other end, I’m going.

My uncooperative and obstinate cancer may not respond to this chemo — given its history of response to standard treatments — but then again, it may. Even if it slows down just a little bit, it will be worth it.

This chemo may also get me disqualified from the Detroit study, but then again, it may not. My family, my oncologist and I all agreed that we have to take that chance; I simply can’t go another 5 weeks without trying some kind of treatment.  Some kind of something.

So, even though I am typing this with one hand and only one eye open while lying down in a vegetal state with an excruciating, pounding headache, I am actually feeling better.  All is not lost.  There is action, so there is hope. 

And best of all? The CT scan showed that my brain is CLEAR!!!  I was warned not to get too excited since an MRI will be required to be sure that there is nothing evil lurking in the neuro-spaghetti, and of course those pesky “auras” and headaches still need to be explained… but don’t get too excited about a clear brain scan??? That’s a tall order, given the shortage of good news around here.  How about just being incredibly relieved and grateful that today at least I don’t have to reckon with cancer in my brain.  Today, and maybe a few more days.  Maybe lots more days.

Yes, I can hope, and I try to.  But yesterday I met with my cancer shrink whose horrific job it was to tell me that I also need to recognize that this cancer is crashing through every obstacle we put in its way, and the reality is that maybe nothing — no treatments or trials or anything we can throw at at it — will stop it from killing me.  My amazing cancer shrink who by the way I truly believe is one of those rare people who is doing what he was put on this earth to do (he really is that good at it.) Unfortunately this is what he was put on the earth to say to me yesterday.  

Not that I hadn’t already recognized it and begun to wrestle with it on my own, and with my family and friends.  But when your shrink tells it to you… ouch.  Holy Moses, it’s real.  It’s moments like those that you realize this isn’t one of those nightmares you get to wake up from. It’s moments like those when the world freezes and you feel like you have just glimpsed the way the whole thing works but it doesn’t matter anyway because all you want to do is love the people you love and live the life you love living… except maybe you won’t get to do that anymore. 

What do you do at a moment like that?  I just cried big fat gigantic splashing tears, and when they slowed down enough that I could look him in the eye I said, “My god. I’d really f**king hate to have your job right now.”

So this is where I am.  This is where my family and I have to live right now: on this razor’s edge, this impossibly narrow place right smack between the terrifying reality that perhaps nothing can stop me from dying from this cancer, and the slim shiny hope of a clear brain scan and a meeting in Detroit.

And so far, the only way I have found to stay sane while living in this narrow place is to say it to myself every day, several times a day, and many times throughout the night: 

but what if it works?

Let’s Hear it for Motor City

Detroit said YES!

It’s a clinical trial testing the promising TDM1 in combination with two other drugs, and the doctor leading the study is a very well-respected and renowned oncologist.  Plus, I spoke to her on the phone and I really liked her moxie. Detroit is the closest-to-home of all the cities I have applied to – and we have almost-family friends there, which is a great comfort to me as I consider being away from my own little family for long stretches.

BUT…

I am not in yet.  I still have to qualify for the study, which means passing a barrage of physical exams.  My most specific fear is that these migraine auras I’ve been getting and the blurred vision I sometimes experience portend brain metastasis, which would exclude me from the trial.  On the other hand, I’m totally exhausted and all I do is work on a computer all day long, so maybe it’s just eye-strain.  I was saying to a friend earlier today, it’s funny when it gets to the point that the idea of cancer in the brain isn’t scary in and of itself but rather because it might mean I’m not eligible for a clinical trial. (Well, I guess that’s funny surreal, not funny ha ha.)

AND…

There’s another problem. Assuming I qualify, my place on the study will not be open for another five weeks from now. 

Five weeks.

I think we all know I can’t go another five weeks without treatment. I barely have the strength to type this post. And if I fear brain metastasis now, I can be fairly certain of further metastasis to somewhere in five more weeks without any treatment whatsoever.

The good news is that this trial doesn’t require patients to be treatment-free for four weeks prior to start-date, only three.  So I need to access some kind of treatment now, for the next two weeks, and then stop 21 days before the start date of the trial.  This is precisely what the study doctor recommended on the phone this afternoon.  In fact her first questions were all about how I’m feeling and what we can do to improve things before I begin the trial.

So, what indeed can we do?  Radiation? The last-straw chemotherapy? A combo of approved drugs not currently approved in combination?  I have a call scheduled with my oncologist when she’s out of clinic later today to discuss the options. 

Stay tuned…

Full-time Job

Researching and applying to clinical trials is a full-time job with no benefits, terrible hours, and lousy pay.  The working conditions are truly appalling, and my boss (me) is totally unreasonable, always pushing and driving me, no matter how tired I get. But since I am also the HR department and the union rep, I don’t really have anyone to complain to.  On the upside, the dress code is great (hey, I wore that yesterday!) and the workspace is really comfy (my bed! my kitchen counter!)  Plus, this could turn out to be fulfilling work. We might end up saving lives over here – not a thing writers typically get to do in the course of their careers.

But I’m new on the job and the learning curve remains steep.  Some of the lessons I’m learning are painful: many trials listed as “open” turn out to be closed; and in spite of the fact that patients don’t pay for the trial drugs themselves, the cost of clinical trial participation in the States is staggering (I can’t even be evaluated for trial placement for less than a few thousand dollars U.S.)  It’s hard work, but at least I’m extremely well motivated.

So what does a typical day on the job look like? 

I wake up, get my daughter and husband out of the house, and immediately begin working on finding clinical trials.  First I try to find out if the trials we’ve identified are open – this was recently made easier by a lovely friend-of-a-friend who coached me on decoding clinical trials and gave me a central hotline* for the pharma company testing TDM1. (When I tried calling from Canada they asked that I contact the company’s Canadian headquarters as the service was designed for U.S. residents only, so now I just get my dad to call them from California to see if a particular trial is still open.  He tells them his daughter lives in “the North East.”) This has saved me days of work. 

If a clinical trial is still open, I contact them and try to find out if they have any places left, how long the waiting list is, when they’ll be accepting new candidates, what the application protocol is, etc. etc.  I have usually had at best a piece of toast and maybe some fruit at this point and I tend to become aware of my hunger and the fact that it is past noon, simultaneously.  Or, I get tired and go back to sleep for an hour or two.  My boss permits this as experience has taught her she’ll lose her best worker for the whole day to a migraine if she doesn’t let her eat and sleep a bit.

After my break, I switch my focus back to Toronto, calling my oncologist’s office to follow-up on her progress getting me approved for a non-standard treatment involving standard therapies (don’t ask.)  I’ll forward her any application instructions from U.S. cancer centres, and lately I’ve also been chasing an appointment with the symptom management people.  They are actually called the Outpatient Palliative Care people but I don’t want to say that because everyone knows that Palliative Care means taking care of the dying and that’s the kind of thing that makes me plug my ears, close my eyes, and say “Lalalala” really loudly until it goes away.

What I really want to do at this point of the day is to eat fresh baked bread with lots of butter and take a hot bath.  Instead, I try to follow leads on the most recent trials that Willow dug up for me, trying to track down new central information numbers for them since they are different pharmaceutical companies to the TDM1 trials.  I investigate the possibility of getting access to a closed TDM1 trial (not likely) or access to drugs that are approved but not available in combination as standard therapies (unorthodox, frowned-upon, and tied-up in bureaucratic red tape.) Finally, if there’s any time left in my day I try to research complementary medicines, supplements, therapies, and nutrition – but this kind of research ends up taking a backseat to the all-consuming pursuit of clinical trials. As does remembering to eat well and take my supplements. 

(I am almost 100% sure that somewhere in those last few paragraphs I lost you by using language that sounded like this: sdjfhkkksidfuhserioufjghi.  This is a hazard of my new line of work – you learn that becoming fluent in Cancer Speak is essential to survival, but actually speaking it has the unfortunate side effect of making everyone around you go all glazed and fuzzy.)

Anyway, this is my day, day after day. Onward I trudge.  Some amazing people have come trudging along with me.  There are people who have helped me understand the clinical trial system, people who’ve helped me figure out which drugs or treatments are the best options for me, people who have investigated special access or other programs, and people who have helped me find new trials.

And then there are lots and lots of people who have made me food, made suggestions, made me laugh, made my life easier, encouraged me, advocated for me, kvetched and commiserated with me, and helped me get back on my feet to try another day.

I have all this support – perhaps far more support than someone who wasn’t publicly blogging about her situation would have.  And I have an outrageously supportive immediate circle of family and friends – they want to help, research, make phone calls, and go web-spelunking… They want to and they do.

And yet I still don’t have a trial.

What I do have is trouble breathing after climbing the stairs, lumps that are growing, coughing fits that leave me gagging and shaking, headaches and weird migraine auras and cough fractures and low grade fever and a really pathetically limited amount of energy.  In other words, no time to lose.

I also have a dashing husband with whom I am ridiculously in love, an amazingly beautiful little girl, a family that makes me feel like I was born blessed, and friendships that make me feel like I grew up lucky. In short, a life worth fighting and fighting and fighting for, even if the fight takes the rather humdrum form of hours on the internet and papers strewn all over the bed.

I haven’t worked like this since my dotcom days, and we all know how that era ended.  I may not like this job, but since I’m not quitting and it’s unlikely that I’ll fire me, I may as well get on with it.  But I’m definitely going to speak to management about getting an espresso machine in here.  And maybe a foosball table.

 

*Genentech trial information 6am-3pm (888) 662-6728

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?”

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.

Lurching Towards a Plan

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.

More Ways to Find Clinical Trials

Thanks to readers’ comments, I learned about a few more super helpful resources for tracking down clinical trials…

This one is on the Livestrong site – very easy to use. I found five matches: http://www.livestrong.org/site/c.khLXK1PxHmF/b.4169727/k.9BEA/Clinical_Trials/apps/s/link.asp

This one is extremely comprehensive: http://clinicaltrials.gov/ct2/search

And this site lists clinicaltrials.gov and many others: http://www.centerwatch.com/clinical-trials/listings/

Many thanks to Jodi & Duckie for the links!