Fundraising update

This is hard to explain without being embarrassed, but at the urging of my Finance Committee, I have decided to raise the fundraising bar higher. We did not expect to raise this much money so early on in our efforts, and we are humbled and grateful for the outpouring of support.

I know that for those of you who have already donated, or are completists, it might seem frustrating to move the goalpost higher, but in this case, it’s a good thing.

For one thing, there are many people who have reached out who have not been able to donate yet, but still plan to do so. While we could simply keep donations open and allow them to go over the goal, we worry it might discourage people from giving if they feel all of the costs have been met. For another, we wanted a goal that would be achievable over the course of the next several months, with donations coming in slowly over time – we would like that to still be possible. Lastly, we are still planning a large fundraising event (or possibly series of events) to bring in a large chunk of money towards the end..

Here is what the new goal would fund:

– The costs of a longer (9 or 12 month) trial, especially given the expected poor performance of the Canadian dollar over this time period.
– The costs of travel and accommodations should I need to enter a trial overseas, as well as associated costs – flights, visas, hotels, permanent or semi-permanent lodging.
– Unexpected/emergency medical costs in the US/Abroad as my trip will not covered by OHIP.
– My rent at home while/if I’m away so that I don’t have to sublet my room and can return to Toronto whenever I’m able to.
– The opportunity cost of 6-12+ months away from a steady income, should that be required.
– The care and feeding of my pets while I’m away, including any routine or emergency veterinary care.
– The cost of cell phone, long distance and Internet access to stay in touch with loved ones while I’m out of the country.
– Costs that I was planning to cover myself beyond the initial fund goal, such as meals, transit, taxis, my regular medical needs (prescriptions and medical supplies).
– I would be able to afford travel home for visits during any off periods of the trial.
– I would be able to afford to have a loved one visit me overseas to provide support and care should I be required to leave Toronto for an extended period of time.
– I would be able to take a small vacation to rest and recuperate after what has been a very difficult 4+ years of treatment and setbacks.

Thank you again so much for your donations and please share this page widely. I am touched, blessed, etc.

http://www.gofundme.com/6tl6so

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I’m overwhelmed

I don’t know how many times I’ve said that over the past 12 hours. I’m absolutely stunned by the outpouring of support from everyone — and not just the financial support. Every share on Facebook and Twitter, all the beautiful, amazing, kind things people have written about me…you guys have buried me in an avalanche of love. And not just people I know — dozens of people I’ve never met have donated and shared kind words of support and love. It just goes to show I keep very good company, and my company, in turn, keeps good company.

Illness is often an isolating experience. There is so much you have to go through alone, so much you can’t share, no matter how you try. But this experience has reminded me that I am surrounded by the most incredible people, that I am supported by a wonderful community.

There is so much more that I want to say, but my head is spinning from the events of today. It is reassuring to know that finances will not be a barrier to entering a trial, even if I have to go further afield than Detroit (but please, please, please let me get Detroit). In less than one day, you have donated more than 50 percent of the funds I need to finance approximately six months of treatment. “Thank you” seems so inadequate, but it is all I have. And I promise I will send a personal message to every person who has donated, but forgive me if it takes a few days. I have a lot of messages to write.

I would be remiss to end this post without including a link to my donation page, so here it is: http://www.gofundme.com/6tl6so

Thank you, thank you, thank you. Thank you for every cent, but thank you even more for all the love and kindness. My heart is full.

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The state of things

So I’ve spent the last few weeks looking into my treatment options and the news has not been great. Novartis, the makers of MEK162, the drug I responded to so well last year, won’t provide the investigational drug outside of clinical trials to anyone other than people with BRAF-mutated melanoma. My doctor could prescribe me GlaxoSmithKline’s Mekanist (trametinib), the only MEK-inhibitor currently approved by the FDA/Health Canada, but the drug costs $10,000 a month and the province won’t cover it through the Exceptional Access Program. GSK could provide financial aid, but claim they can only provide financial assistance if the drug is prescribed for the condition it is approved for (once again, BRAF-mutated melanoma).

The Special Access Program allows doctors to request access to investigational drugs in development, but it’s up to the pharmaceutical companies to decide whether or not to comply with the request. In most cases, the drug companies decide against providing the drug.

Trying to access “personalized” medical treatment when personalized medicine has not, as my oncologist said, “hit prime time, yet” is maddening. How are doctors and hospitals expected to provide personalized medicine when drug companies make n-of-1 trials so difficult to execute?

I’m not completely up the creek, though. My clinical trials oncologist looked in to a trial I might be eligible for in Detroit. It’s an ERK-inhibitor, which means it works on the same pathway as a MEK-inhibitor, but further downstream. The trial is for a first-in-human drug, pills taken every day for three weeks, then with a week off. My regular oncologist thinks this is a pretty good option for me (better than the virus trial, which hasn’t opened yet but should be recruiting in a few weeks). It’s the closest good trial option that I’m eligible for.

The trial has it’s drawbacks, namely the cost and the travel. If I get in, I’ll have to spend the first five days or so in Detroit, then one day a week after that for the next two months (if you last longer than two months, visits decrease to once every two weeks). The drug company covers most of the costs associated with the trial, but not all, which means that if I want to go through with the trial, I’ll have to ask for donations to help me pay for extraneous expenses. As it stands, my visit to the Karmanos Cancer Center next week will cost me $400 (it would have been $700, but I’m getting my blood panel done in Canada to save the expense of having it done in Michigan) plus travel.

I hate that it is so complicated trying to obtain treatment when no other standard of care exists. I hate that I most likely have to leave the country for treatment. I hate that I have to ask for financial help. However, I am happy that this Detroit option exists for me, and that I have an oncologist who took it on herself to look into clinical trials for me. Some things aren’t right, but others are nearly perfect.

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Crowd-sourcing treatment options

To everyone who has offered to help me argue for compassionate-care access to a MEK-inhibitor, thank you. Less than 24 hours after my last post, a friend contacted someone she knows at Novartis on my behalf and he, in turn, is contacting Novartis Canada. Maybe this will be an unusually uncomplicated situation where the drug company generously grants me access to the drug without too much agitation. But if I need to agitate, it’s nice to know I have a lot of you willing to use your voices and work your connections.

This is a strange situation to be in. I really didn’t think I would run out of treatment options so soon, especially not at a time when I feel relatively well (other than the side effects of the ascites, or the side effects of having the ascites drained — I’m in a considerable amount of pain right now as my muscles and organs find their ways back home, but that’s expected and that’s also what narcotics are for). A lot of people have told me how brave I am for making the decision to stop treatment, but I don’t feel ownership of this decision; in many ways, the decision was made for me by a simple lack of options. I think I always thought that when I stopped treatment, it would be a decision I’d make after deciding the treatment was worse than the disease, after side effects became too much to tolerate. But I’m physically capable of tolerating more treatment right now, there just isn’t any treatment (easily) available to me. And I don’t count more cytotoxic chemotherapy — which has a poor performance record in treating low-grade ovarian cancer and, more importantly, a poor performance record in treating my low-grade ovarian cancer — as a viable treatment option.

I feel a bit lost.

I also feel sad, but mostly I feel angry — angry that there aren’t more options for people like me who run out of options long before they should, angry that the research machine doesn’t operate in such a way that individual doctors have more of a say in how to treat individual patients who don’t fit the mold of typical patient or typical research subject. I’m angry that I feel like I have to grovel and beg for some pills that maybe, just for awhile, could give me some stability in my health. I’m angry that so much of my head space is taken up by thinking about cancer, leaving little room for me to think or care about anything else. But I also feel blessed and privileged to have an extended community of people who are willing to help me through this, in various ways, however they can.

 

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Not much left to do but wait

I take offense to the idea that I am “battling” cancer (sorry, Dad, I know you have talked about me fighting cancer, but I just don’t see it that way). I’m not engaged in warfare, I’m living my life with an illness. If this were a war, I would have raised the white flag long ago. But it’s not a war; it’s a biological process gone awry. It’s important to remember that this is not a war because I don’t want the decision I made today to be construed as “giving up.”

I saw my oncologist today, and as expected, weekly Taxol was doing fuck-all. My disease has moderately progressed despite the poison we’ve been pouring on it. My cancer just doesn’t respond well to chemo. It’s a low-grade cancer that came back as high-grade but which still acts like low-grade, which means chemo is generally going to be a bust. So when my oncologist asked if I wanted to try a different chemo, I said no. Because I’m not going to put myself through something that is just going to make me feel shitty and likely do absolutely nothing to prolong my life.

I figured we would be talking about clinical trial options today, and we did. Or rather, we talked about the lack of clinical trial options. I’m ineligible for all the Phase 1 trials because I’ve either done them, don’t have the right kind of cancer, or am excluded because I’ve already been on a MEK inhibitor. The irony is bitter: I can’t go on the drug that will help control my cancer because I’ve already been on the drug that could help control my cancer. If anyone knows how to get on a clinical trial or access experimental treatments through a back door even if they hit the exclusion criteria, let me know. Because I sure as hell don’t know how to do it.

The trial I’ve been waiting for, the immunotherapy trial that uses a live virus to turn the body’s immune system against the cancer, is still not open. There is still a mess of red tape to cut through, and funding issues now, to boot, and this trial — which should have opened back in September or October — is now on hold until at least March or April. Which could mean May or June, the way these things work. That’s the only trial I’m eligible for right now. All I can do is wait for it to open. Hopefully that happens in my lifetime. (Poor attempt at dark humor, but guys, what else am I supposed to do? I’ve already spent most of the day crying.)

So while I wait, I’m starting anti-hormone therapy, which has a miniscule chance of doing anything useful, but has minimal side effects so it doesn’t hurt to try. It helps stabilize low-grade ovarian cancer sometimes, so might as well see if it does anything for me. At least it won’t feel like I’m doing absolutely nothing.

I’m not going to lie, I’m in a pretty grim place right now. Choosing to forego treatment is not an easy decision to make. But I’m not interested in in pursuing treatments that are unlikely to do anything but affect my quality of life just so I feel like I’m not “giving up.” And I will happily undergo treatment again, just as soon as something appropriate comes along, or I figure out how to get Novartis to give me access to the only drug that has ever worked for me.

Until then, I wait.

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New year

It’s been awhile since I’ve posted anything because there really hasn’t been much to post. The symptoms I had on the last trial pretty much went away after I stopped the drug, and the weekly Taxol treatments I was receiving weren’t particularly eventful. Every Monday, I’d go into the hospital; every Monday, I’d have chemo.

I’ve completed three 3-week cycles of Taxol and go in for a CT scan this week. I expect that as of next week, I’ll be off Taxol and looking to clinical trials again. My tumor marker has been rising, despite the chemo (not a surprise) and after three months without symptoms, I can feel the ascites building up in my abdomen again. It’s subtle, but I can tell it’s time to have the fluid drained because I can’t eat or drink much without feeling absurdly full, like I’ve sat down and gorged on a huge meal, even if all I’ve had is a cup of coffee or a piece of toast. And my muscles hurt, like they’re constantly distended (because they are).

When I see my oncologist next week, we’ll confirm whether or not the chemo has been working, but like I said, I don’t think it’s done anything. This is what I expected when I started the weekly chemo, which I was reluctant to do in the first place — I was seriously considering not doing any treatment until new trials opened up this month, and now I wonder if I should have done that and saved myself the hassle of weekly hospital appointments and losing my hair. There’s not much point in dwelling on it though; there’s no way of knowing one way or the other whether I would be in a better or worse situation had I not started chemo, or if I would be in exactly the same place I’m in now.

It’s frustrating to be back to square one with fewer options at hand. For reasons I’ll explain another time, getting into a trial with the class of drug that I am most likely to respond to will be difficult, if not impossible. I’m not sure what other trials will be available to me, though there’s a high probability that I’ll end up in an immunotherapy trial. I’ll know more next week after I’ve talked to my oncologist. Until then, I’ll just sit tight.

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How it is

Illness is monotonous.

I typed that first sentence then spent 10 minutes wondering what to write next. Things aren’t bad, but they aren’t good. Scratch that. Things probably are bad, or would seem that way to most people, but to quote the great Lee Hazlewood, I’ve been down so long it looks like up to me.

On paper, things don’t look that bad. My tumor marker dropped, my disease looks more or less stable on scans. But I’ve been having recurrent partial bowel obstructions which incapacitate me with stabbing pain and non-stop vomiting, occasionally sending me to the emergency room so I can be dosed with massive amounts of anti-emetics and narcotics while I wait for my intestines to relax and start working again, which they do after a couple of days of not eating. I could write a lot about food and how I can’t eat most of it, but I think I’ll save that for another day.

I’m also still dealing with the fluid that builds up in my abdomen (and which is quite likely the cause, or a cause, of the bowel obstructions). Every two or three weeks I go in and have it drained, usually two or three litres worth. The last time I went in to have the fluid drawn off, there wasn’t enough for the doctor to access without the risk of puncturing an intestine, which was good news since it suggested the fluid was building up at a slower rate. But then I ended up with a bowel obstruction, which dehydrated me, which led my oncologists to hook me up to IV hydration for two days, which led to fluid building up in my abdominal cavity. It was like there was a direct line from my vein to my abdomen. I gained 10 pounds over two days and started vomiting (again) because my stomach was compressed by all the fluid. So I spent the weekend in the hospital, had three litres of fluid drained, and stuck to hydrating myself by taking small sips of water throughout the day.

Yeah, so despite things being stable, they aren’t quite stable. So I’ve gone off the trial drug. I’m not really upset about it — even when I wasn’t dealing with obstructions, the drug made me feel like shit.

I met with Dr. Mackay, my former oncologist, to talk about what to do next. There aren’t any phase one targeted trials for me to do right now, so I knew we’d be discussing conventional chemo or a trial mixing a conventional chemo with an experimental drug. I assumed we’d be looking mainly at Caelyx (also known as Doxil), which we’d discussed two months ago when we met last. It’s the standard second line treatment for recurrent ovarian cancer, and she had a couple of phase two trials that incorporated Caelyx, which we’d already discussed. Phase two trials are bigger than phase one — they last longer and accept more patients, hundreds rather than dozens — so it seemed likely we’d be looking at those again. But here’s the thing. Most of you probably won’t remember this, but the entire reason I started in phase one trials was because I failed carbo/taxol, the first line chemo combination I was on, and Caelyx wasn’t available because the facility that produces the drug had shut down. Well, history repeats itself. Production of Caelyx has been halted again (likely for good, this time) and oncologists in Canada can’t start any new patients on the drug.

I just laughed when Dr. Mackay told me this. Of course the drug isn’t available. So instead of going on a chemo that I’d only have to take once a month and which would let me keep my hair, I have to go on weekly chemo that will make me go bald (and which isn’t as effective as the non-available alternative).

This isn’t the only thing I’ll be doing, however. In a month or two, a new vaccine trial is opening up and provided I’m physically able to take part, I’ll be enrolled in that. The start of the trial has been held up while the hospital waits for permissions (I guess there are a few hoops to jump through when your experimenting with live pox viruses) and they won’t be enrolling patients until at least the end of November. We discussed my taking a treatment holiday until the vaccine trial opens up, but Dr. Mackay was worried that they might not be able to start enrolling patients until January, and she didn’t want to risk me progressing too much to be able to go on the trial (which requires surgery). So in the interim, it’s weekly taxol. The best I can say about this is that at least it is easy to tolerate.

I don’t have many feelings about this. After awhile, picking your poison becomes tedious, mundane. It’s hard to work up any sort of emotions about the whole thing. It is what it is.

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