Time to check in

I feel guilty not letting people know how I’m doing, especially given all the support I’ve received. The least I could do is keep in touch, let you know what’s happening.

I went through a pretty intense period of depression. I think it comes with the time of year — my recurrence was diagnosed at the beginning of July, and instead of basking in the warm weather and long days, I just get really really sad. Like, couldn’t stop crying sad. Secretly (or maybe not so secretly) crying in public sad. I went to my psychiatrist and he got me back on anti-depressants and it’s helping but I still can’t talk to him really. I don’t know what to say. I sit in my sessions watching the minute hands sweep around the clock, crying, or just sitting silently.

I’m still in the clinical trial, still going to Detroit. For awhile, I was going every two weeks. But I just had a CT scan and if it shows things are good, and good means stable or maybe even slightly smaller, then I only have to go once a month. That makes me happy. Going to Detroit is hard. It’s hard mentally and emotionally and physically and financially.

I’ve been a shut-in, too. Part of that is the depression. Part of it comes from physical side effects from the treatment and the disease. The drugs I take causes fluid to build up in my abdomen at a much faster rate than before. Once a week, I was having two litres drained. Then I got a blood clot and had to go on blood thinners and my doctors wanted me to get drained only every other week, but that’s left me in so much pain and discomfort that it’s all I can do to just sit at my computer and work and lie on the couch and watch hours of Netflix or read hundreds of pages of books. So fuck the blood thinners, I’m getting drained once a week again.

My blood protein levels are really low, too, maybe because of all the ascites I’m having drained from my abdomen, maybe from the drugs, maybe from malnourishment because I can’t really eat the way I’m supposed to, but that means I get really tired and sometimes my legs swell up with edema and it’s really painful. Traveling makes it worse, which is one of the reasons Detroit is physically challenging.

I throw up a lot, too. Just randomly. Sometimes right after eating, because my stomach is compressed by who knows what, tumor, fluid, intestines floating where they shouldn’t be, but sometimes just randomly for no reason. It makes it hard to go out when you’re never sure if you’re going to need to puke suddenly. The heat and humidity makes it worse (not that there’s been much of it, for which I’m grateful).

For awhile, I was ready to just quit the trial. I’m so uncomfortable so much of the time, it’s hard to know if it’s worth it. Especially because it’s hard to know what discomfort is from the disease and what is from the drug. Being on an antidepressant has made it easier for me to just sit and wait for the scan results and make a decision based on that. My last scan was good, stable at least, and my tumor markers are lower. But it’s hard to feel like a drug is doing something good when physically you feel just as bad as you did off of it. Maybe not just as bad, just bad in a different way.

I’ve been lonely, too, I guess because of the shut-in thing and the not going out and the depression and not telling anyone about it. I need to learn how to socialize differently, to ask people to come to me because it’s just too hard to go out right now. So you know, if you want to come over and watch movies with me or just drink iced tea and hang out, let me know. I’ll be gone for a couple weeks, but when I come back I want to try to start living like a person again, at least a little. And I live in a nice new apartment now that’s beautiful and cool even on the hottest of days. You can even bring your laundry if you want.

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A long overdue update

It’s been a rough two months. Not only did I start the Detroit trial in April, I also traveled for personal reasons. I was out of Toronto for most of the month, living out of a suitcase. Travel is difficult at the best of times. My life doesn’t exactly fall under the “best of times” category right now, so everything has been just a little harder to get through.

The drug itself doesn’t seem to be causing any significant side effects. I’ve had some rashes, which have mainly disappeared. There is fatigue, but I don’t know anymore whether the fatigue is from the travel, the medication, the lack of proper nutrition, or simply from a body run down by the combination of these things. I’m tired. Very tired, all the time. I know the answer to this is probably to start slowly building my energy up — taking short walks, gentle yoga classes, getting in a pool — but I am so tired, that even these simple things are daunting.

And then there is my stomach. I haven’t had a good relationship with eating since at least February, probably earlier. Fluid builds up in my abdomen and compresses my stomach, leading me to feel full after eating a small amount of food or, worse, leading me to throw up after eating. For awhile there, any time I ate, I was let with stabbing pains in my stomach until I either threw up, or lay down long enough to let it pass, or both. That doesn’t happen now, but I still can’t eat a normal-sized meal without feeling painfully full. Recently, I started throwing up even without eating. I’ve been experiencing heartburn for the first time in my life, so the nurses are trying to see if there’s an acid problem in my stomach that is causing the nausea and vomiting. So now I take 300 mg of Zantac before bed every night to see if that helps. It’s too soon to say. Coupled with lorazepam and another anti-nausea pill, I seem to be doing ok, though at the expense of a clear mind. It takes me four times as long to work as it normally would, and I’m not entirely sure my editing skills are up to par. But I’ll adjust to the new medication and things will get better.

The weekly trips to Detroit slow down now. I only have to go every other week. This is good. One side effect of the experimental drug is edema in my lower extremities, particularly if I have been sitting for long periods of time. At home, I can get up from my desk often enough, or work from my laptop lying down, so it isn’t an issue. But in the car or on the bus, it’s a different story. The train seems to be the best option because I can walk around at least. But it isn’t perfect. Edema is just another thing happening in the body to contribute to exhaustion.

And the exhaustion is pretty profound. I don’t notice it always, but then it hits me and I realize just how little I am capable of doing compared to where I was last year. Everything is a struggle. It’s reached the point where I have been seriously considering finding a new home for my dog, but how do you find a home for a deaf 15-year-old arthritic lab? It’s not something I ever thought I would ever have to think about but I need to find ways to make things easier for me. That’s just the reality right now.

I’m sorry I haven’t kept everyone updated more as this trial has started and gotten underway. I’ve just been struggling with feeling tired, and not feeling better yet, and I think I really hoped there would be some big significant change for the better right away, but it’s not working like that, so I’m a bit disappointed, but mostly I’m just tired. Just really, really tired. I wanted to have better things to say, but right now I don;t.

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It’s a (tentative) go

I talked to yet ANOTHER person from Karmanos today (so far, I’ve collected no less than six phone numbers from people involved in my case) and he told me that I’ll know next week which cohort of the trial I will be enrolled in. It’s taking longer than normal to get concrete answers about a trial spot because the sponsor (drug company) and investigators (lead oncologists at the cancer centers that are running the trial) need to have a conference call to determine whether the next cohort will be a dose escalation or dose expansion phase. Here’s a quick lesson on Phase 1 trials (to the best of my understanding).

Phase 1 trials are designed to do two things in particular: First, to find the maximum tolerated dose level; second, to identify potential side effects and adverse reactions (called ‘events’). There are usually two parts to a Phase 1 trial—dose escalation and dose expansion. With dose escalation, they start at a low dose of the drug, and with each cohort (new group of people enrolled in the trial), increase the dose until it is at the highest level tolerate by the patients. Once the maximum tolerated dose is established, the trial moves on to dose expansion, which means the size of the cohort increases. (Note: this is an explanation for a Phase 1 trial using a single agent—with multi-agent trials that use two or more drugs, dose escalation is a bit more complicated, and it doesn’t apply right now, so I won’t get into it.)

If the sponsor and investigators decide that the trial should continue in dose escalation, I won’t have a spot in the trial until the next cohort is enrolled in early April (which would likely mean starting treatment in mid-April). If they decide to move into dose expansion, the cohort will increase and I will get a spot in mid- to late-March. Currently, three patients are enrolled for each cohort; once dose expansion is established, this will likely increase to six patients in each cohort. A new cohort is generally enrolled every three to four weeks. If the sponsor decides to continue with dose escalation, I could still enter the trial sooner if one of the three people entering the next cohort fails the qualifying physical examinations.

However it plays out, it’s good news (for more reasons than simply being accepted to a trial). It’s preferable to be enrolled in a Phase 1 dose expansion rather than a Phase 1 dose escalation, as there is generally indication of therapeutic value of the drug by this point, and you have a much better idea potential side effects. If you are enrolled in dose escalation and are in an early cohort, chances are that the dose will be too low to be therapeutic. Basically, you can have the right drug but at the wrong dose level (which is what ultimately ended up happening to me on the MEK inhibitor trial once my dose was reduced—it was the right drug, but the wrong dose). If the sponsor is considering moving to dose expansion, I know that they must be close to finding the ideal dose, which means I shouldn’t run the risk of the trial failing because the dose level isn’t high enough. And if they decide this next cohort will be dose escalation, it’s likely that the cohort after that will be the expansion cohort. Either way, I should be starting the trial at the ideal (as far as anyone knows at this point) dose level.

The sponsor and investigators are having their conference call on March 7th or 8th, so I should know more about which cohort I’ll be enrolled in next week. Of course, there is always the chance that something will come up in my screening exam that could preclude me from the study, but it’s unlikely that will happen. In the meantime, I have a CT scan this week and an appointment with Dr. Siu to go over the results next Monday, so I’ll find out how my cancer is doing on its own, if it’s relatively stable or if it’s progressed since I stopped weekly chemo. I’m actually pretty interested to find out. I was on hormone-blockers for almost a month, and it’ll be interesting to see if they did anything. Tumor regression is unlikely with the hormone-blockers, but not an impossibility.

In fundraising news, I’m at 67 percent of my goal (which puts me at just over $33,515). We’ve got some fundraising activities in the works, which I’ll write more about as the details are defined. In the meantime, you can donate here if you are so inclined. Several people have asked if offline donations are an option, and they are. Contact me if you would like to arrange something. Donations that aren’t made through the site are still added to the total earned, and are reflected in the amount raised on the GoFundMe site.

It’s actually happening, guys. It’s still a ways away yet, but it’s happening.

 

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The wait is almost over

So I met with the oncologist in Detroit at the Karmanos Cancer Institute last week. It went well — the visit was pretty straightforward, given that I am familiar with phase 1 trials and have a pretty good grasp of the kind of trials I’m pursuing (and why I’m pursuing them). I liked the oncologist, who is kind of a blend of my two oncologists at Princess Margaret Cancer Centre. She’s an oncologist who works in phase 1 trials, but also specializes in gynecological oncology (most phase 1 trial oncologists are medical oncologists, not oncologists who specialize in a particular type of cancer). She told me the phase 1 team meets Tuesday to Thursday, and will discuss my case then. As long as I fulfil the criteria for the trial (which I did on first look, but sometimes things come up in review that can change that) and there is a spot for me, I should be in. Hopefully if there isn’t a spot for me in March, I can simply start in April. I can expect a call from Karmanos on Friday.

This last week has been heartwarming, to say the least. I am currently just shy of $32,000. I have seen friends, family, acquaintances, and strangers pull together to help me raise the money I need if I’m to pursue a clinical trial. I am slowly but surely making my way through the list of people who’ve donated to send out thank yous. With almost 600 donations, it will take awhile, but it is time I am more than happy to spend. If you donated and haven’t heard back from me, forgive me. I will eventually get there!

In case you missed it, my darling Catherine McCormick wrote a beautiful piece for shedoesthecity.com about our friendship and how to be a good friend to someone with cancer. Everyone should read it (and then go read Catherine’s other pieces on the site because she’s a kick-ass writer).

Please keep your fingers crossed that I get into the trial in Detroit. It’s funny — I’m feeling better now than I have in a really long time. Being off treatment for two months has helped my body recover a bit. I’m still not “normal” (I don’t know if I even remember what that feels like, or if I will ever feel that way again), but being only anemic instead of severely anemic really makes a difference in my energy levels. It is also nice not to have the weird constant leg pains that I had with weekly Taxol. But all that aside, I’m ready to get back to active treatment, rather than actively seeking treatment.

Finally, if you are so inclined, please share my fundraiser page. We’re getting closer to the goal, but there is still a ways to go: http://www.gofundme.com/6tl6so

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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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