Tag Archives: willow breast cancer support

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

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Filed under Living with Breast Cancer

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.

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Filed under Living with Breast Cancer