Moving forward with a clinical trial

It's been a tough couple of weeks since we got the news that Amanda's cancer returned. Amanda has had a lot of visitors to keep her mind busy, but there are still some very hard moments when the enormity of the situation is impossible to ignore.

Even with all this, we've had to consider what the next step of treatment will be. Amanda wrote this post for Facebook, and I share it again here so everyone can know what's coming up. Thanks, Amanda, for writing it!


After researching and discussing all treatment options available to me at this point in my disease, the decision has been made to be a study participant in a clinical trial called PROCEED. This trial is being offered both in Halifax and Toronto and I have the option to start treatment here and finish it there. Only 600 women are participating around the world, and I will hopefully be one of them.

Being apart of this clinical trial is far superior than the "standard treatment", because we all know where THAT gets me. This offers a chance of a longer period of PFS (progression-free survival).

This trial involves a drug called Caelyx, the former "go-to" chemotherapy for platinum-resistant recurrent ovarian cancer, which is no longer available outside of clinical trials. The trial involves 2 groups of patients: one will receive Caelyx and a placebo, the other will receive Caelyx and the test drug (EC145). I've got twice the chance of being in the test drug group.

The test drug is a targeted chemotherapy (which means, rather than floating around killing every reproducing cell, it will target the ovarian cancer cells only, hopefully). Apparently, 80-90% of ovarian cancer cells have folate receptors (think of a receptor as a door). The test drug is a combination of a folate molecule and a very toxic chemotherapy. The belief is that once the drug gets to the cancer cells, it knocks on the "door" and because it carries folate, it will be allowed in. At that point, think trojan horse - it lets loose the chemo.

While the idea of clinical trial might sound risky, this is a good trial to be on. For one, I'm guaranteed Caelyx, a drug known to have relatively good ("relatively" is as good as it gets at this point) success with this stage of this disease. Caelyx is tolerated relatively well (it should still suck, but not as much as the first stuff I was on). There's a 2:1 chance I'll get the test drug. This is a Phase *3* trial, which means it has already gone through 2 earlier stages of study to ensure side effects are tolerated, to figure out an effective dose, and to determine that it can increase PFS (from ~2 months to ~5 months) for a lot of patients.

I will undergo a series (read: THREE DAYS) of testing next week to ensure I meet the criteria of the trial. The primary outstanding question is, do my cancer cells have folate receptors. They will determine this by injecting me with something and doing a series of nuclear images. I won't know for a few weeks if it's a go. If I'm accepted by the drug company, I should start early April.

If all goes well (i.e. my tumours do not grow or better YET, they shrink), I will be on this trial (i.e. on chemotherapy) for the next YEAR. A huge bonus would be to have a few months after that, not being on chemo, before the tumours return again, at which point a decision will have to be made to start a new chemo regimen, clinical trial or choose quality of life. However unfortunately, my doctor suspects my cancer won't respond well to chemo at all, given it came back so quickly. I'm setting out to prove her wrong.

A link to more information about the trial and a lot more sciency stuff:
If you Google more, the results of the Phase 2 study can be found as well.


Amanda's cancer has returned, just months after treatment

It's been two and a half months since the last update on this blog, and I was hoping to write one soon with lots of good news.

I was going to write about our recent trip to Jamaica, where we got to go snorkeling, bake in the sun and meet nice people from around Canada and the USA.

I was going to write about how Gordon is now 11 months old and exceeding all our hopes. He's a little dynamo who's not that little -- out of 100 babies his age, no normal one would be bigger. He's spectacular and we love him to bits.

I was going to write about putting the finishing touches on the Twin City Wrestling TV show that I've been working on for the past several months. It's just about ready to be sent in to the broadcaster, and it looks great.

I was going to write about the Canadian Cancer Society using our story in a very moving fundraising letter for their winter campaign in Nova Scotia.

I was going to write about Amanda's trip to Toronto to learn about how Prince Margaret Hospital does their cancer-survivor follow-up care, and how she had a nagging suspicion that her cancer had come back, even though a CT scan showed nothing.

Sadly, that last one didn't come to pass.

The cancer is back, and that's very bad news.

To recap quickly, ovarian cancer is not just cancer in the ovaries. It's a cancer that starts in ovarian tissue, but it tends to spread elsewhere. In Amanda's case, when it was discovered during her c-section delivery in April 2013, it had already spread to her omentum and a few other places in her abdomen. She had several rounds of chemotherapy with carboplatin and palictaxel (Taxol), then a major surgery to take out the tumours, her uterus, ovaries and tubes. There was a bit of tumor on the underside of her diaphragm that the doctors could not safely remove. She was supposed to have had a series of intraperitoneal (IP) chemotherapy treatments, but something was botched and that had to be abandoned. Amanda had several more rounds of carbo-taxol, many hospital stays, many setbacks, and a long, difficult, painful summer and autumn. She's since suffered from joint pain and anemia after the chemo.

Otherwise, though, it seemed like things were going well. Gordon has been a delight. We'd found a routine. Amanda and the baby were getting out to activities like Kindermusik and mom-and-tot swimming. We had a vacation. We were starting to imagine a future that, though limited, could include breaks from thinking about cancer. Life was looking good, but as I wrote in the last update, she was concerned about follow-up care.

Connections at Princess Margaret's Hospital cancer centre in Toronto arranged for Amanda to see the head doctor there to talk about how they handle ovarian cancer follow-up. The appointment was made, and Amanda prepared to fly to Ontario with Gordon and visit family while there. But the night before her flight, a Friday evening at 5:30pm, the hospital called and said the doctor was not there. He was out of the country for three weeks and someone had forgotten to tell us.

She went anyway. They found a doctor to meet with her and she had a very informative and settling discussion about what ongoing monitoring and treatment options look like in Ontario. It's different than here in Nova Scotia, which might be surprising to some. If you think Canadian health care is the same across Canada, well, it's not. Different jurisdictions have different protocols and different options available. Each has their reasons, I'm sure.

Amanda had a feeling something was wrong. She felt "twinges" of pain, pulling, burning, whatever. Word of "nodules" that had been seen on post-surgery CT scans in late 2013 troubled her, and she felt symptoms that troubled her. But entirely aside from that, she had a feeling. Her doom sensor is pretty sharp.

She pushed for some investigation at the Nova Scotia Cancer Centre.

They did a CA125 test, which looks at a specific blood marker that's often a helpful indicator of active ovarian cancer. Her past test results were not especially useful -- they were higher than normal, but not as high as they could have been with as much cancer as she had back then. This time, the result was low: 6. Really, 6 is a low reading. A sigh of relief. But a CT scan would still be used to be double-sure.

Amanda went in for the scan two days after we got back from our one-week trip to Jewel Paradise Cove (which used to be Hedonism III, which is a whole other story) and we waited for the results two days later.

I was not expecting anything bad. At worst, I thought the doctor would say the radiologist saw some vague densities here and here, which could be scar tissue, which could be nothing, which are within the margin of error for measurement, which means nothing, but we'll keep an eye on you every few months.

Instead, the doctor said the cancer is back.

Several tumours, the largest being about 2.2 cm. One near the top of her stomach. One near her splenic flexure (the last turn of the large bowel). Others in other places, I'm not sure exactly where. Her liver looks weird on one side and one of her kidneys is swollen.

Ovarian cancer tends to come back. We knew this. But we thought it might come back years later. YEARS later.

When ovarian cancer comes back within the first six months after treatment, it's worse. It means that it is not cured, won't be cured, can't be cured. It means it's resistant to the main agent used to fight it, which is platinum. Cancer that returns within the first six months is considered platinum-resistant. Throwing more platinum at it won't work very well, and is toxic to the body anyway.

The doctor figures Amanda has another year, maybe two, left to live.

We've been given three options from the oncologist at the NS Cancer Centre: 1) Do nothing, for now. Wait until the cancer grows big enough to cause disruptive symptoms, then start treatment. That's an option because the treatment itself is an ordeal and significantly diminishes quality of life. We've been told that treating early doesn't make you live any longer. 2) Join a clinical trial currently under way involving an expensive drug (Caelyx, pegylated liposomal doxorubicin hydrochloride) that's hard to get but has shown some promise, but be aware that you might not get the 'good' arm of the trial. 3) Treatment with a different drug, gemcitabine.

Another option is to check with Princess Margaret in Toronto and see what they have available. We know they do more clinical trials and work with more experimental things.

So, Amanda went through all that hell last year, unable to simply enjoy being a new mom, and the cancer's already back. It wasn't supposed to be like this. This is awful. This is so unfair. We can hardly even remember what Gordon's first months were like, because we spent so much time in hospital and in recovery and chemo and ... those months are gone. We went through it thinking that it was going to be worth it because it would give us more time with him in the years to come.

Gordon's going to lose his mom. I'm going to lose my wife. Barb and Wendall are going to lose their daughter. Amy and Ruth are going to lose their sister. Amanda's going to lose everything. This is just horrible. This is so horrible. This is more than any of us can comprehend right now. We're all stunned and devastated.

What can anyone say? I don't know! I don't know what to say. I don't know what to do. I can't even process this.

We've been planning, not so secretly, to move to Ontario some time this year. Amanda's sisters live in London. My parents and sister live not so far away in Stratford. Amanda's said all along that it's important that Gordon be brought up around family, since she knew she'd probably die sooner than most. I honestly did not think it would be soon like this.

We love Nova Scotia. We moved here in 2005 to launch News95.7. The station has been through some big changes. So have we. We had our difficulties. We married by the Northwest Arm in front of good friends. We bought a house we love. We started a family. We became part of the community. We were proud to say we were Nova Scotians now. We fought cancer. We've loved, laughed and cried a lot. We don't want to go. But going is the right thing to do for Gordon.

I don't know when we'll move. The whole thing scares me. Where will I work? I'd like to stay with Rogers -- I've been with the company for 20 years and they've been good to me, but they don't have a big radio presence in London. There's a Rogers news-talk station in Kitchener. Maybe I could be a professor in radio, journalism or even TV at Fanshawe College? That would be good, but I don't imagine those jobs are easy to come by.

These are thoughts we're unable to properly consider right now. Right now we're bowled over by loss.

Loss of the idea that life could be normal for a little bit. Loss of hope that Amanda could be free of pain for at least a little while. Loss of the dream of growing old together and raising this perfect little boy.

It wasn't supposed to be this way. She and I have both faced challenges in our lives, and for a brief shining moment it felt like we both had everything we'd always wanted. Now the future is frighteningly uncertain.

Friends and even strangers, I know, will be wondering what they can do or how they can help or even what to say. I don't know.

Amanda wants me to read Tuesdays With Morrie. She said it changed her life when her dad died of brain cancer some years ago, and she says it lays out how she wants to live the end of her life, and how she'd like others to be, too. I got through part of the audiobook version as we lounged on the beach in Jamaica, but about 40 minutes in, it was just too sad. Too sad to imagine Amanda one day not being with me. Just days ago, I thought that might be five, ten years from now.

She says she doesn't want people to have to tiptoe around her or avoid her or hold back what they feel. She wants to be real about this. As you've seen over the past year, I've been doing the same thing.

I'll keep you up to date. Thanks to everyone who's been asking how things are. Big thanks to Barb & Wendall who took care of Gordon while we were in Jamaica and stayed an extra week afterward. It was good to have them around when this blew up, although I know it's been very hard for them, too.

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