Wednesday, April 23, 2014

A good friend will be pounding the pavement to help us out

It's been an eventful few weeks.

Amanda's begun the new chemotherapy trial and the side effects haven't been too bad so far. Certainly not as pronounced as they were from the carbo-taxol combo last year. Her veins are pretty bad from all the chemo last time, so they've been having to poke her so many times to find a good place to infuse the drugs. Tomorrow she'll go in to have a port implanted near her collarbone, so the nurses will be able to just stick the needle there instead of having to fish around for the vein.

Amanda gets her first dose of the mystery drug....or a placebo.
There's some other big news that I'll hold back on for a bit, but it's good stuff. Not cancer stuff, but Big Life Stuff.

I want to tell you a bit about something some good friends of ours are doing.

We met Greg and Suzanne Morrow when Greg worked with me at News95.7. Greg's a talented broadcaster and one of those superbly nice guys everyone should get to know in their lifetime. The two of them have been welcoming and generous at every turn, the whole time we've known them, even as they've faced personal tragedies in their own lives.

A few years ago, they moved to another part of the province, but we've kept in touch.

Amanda and I have seen them every year when Greg has run the Bluenose Marathon. Every year, he says it's going to be his last time, but he keeps coming back to do it again. I don't know how he does it. Well, part of it, he says, is that each year he runs for someone close to him, usually someone who's died in the past year. Too many people in Greg's life have died.

This year, he's running for us. And he's raising money.

Greg talked about it on the radio station where he's News Director, 101.5 The Hawk:



We still feel kind of weird about fundraising. We're proud, hard-working people and have never felt like charity cases. But we know people really, really want to help, and this is one way for people to help. It's certainly not something we'd ever *ask* for, and we've even turned down some offers.

"Initially, this made Scott and I uncomfortable and honestly, it's still quite overwhelming," said Amanda on Facebook. "We've always been very independent and believe hard work pays off. My career has often had me working with people living in real poverty, unable to feed their families. So, to accept other people's monetary support is still very new and strange to us. We've opened a special bank account and have been setting all funds raised aside for Gordon, hoping we won't have to dip into it to fund the next year or so. My wish is that this fund will allow Scott and my family to further enrich Gordon's life with activities, travel, education, etc.."

Some great people have raised funds for us -- my co-workers had an event, Halifax photographer Shannon Bower and her clients have been overwhelmingly generous, a local cloth diapering group raised money last year, my sister Shannon has been doing a Tupperware fundraiser in Ontario ... and now our friends the Morrows are giving 'er.

We've stashed the funds in a savings account. Gordon's life is going to be different. His mom's going to die, probably before he's even able to talk. The money is intended to help give him some memorable experiences and round out his young life. We've been treating those funds with great respect. We know people have given with their heart.

I invite you to head to the Giv'er for the Simpsons Facebook page to read more from Greg.

We thank them, and you.

Thursday, April 3, 2014

Happy birthday to Gordon, and good news for Amanda

Our little boy Gordon is now a year old. He continues to impress. We had a party for him on the weekend and lots of people came out to see him demolish and consume a cake. I think he's finally burned off all the sugar.

Scott Simpson, Gordon Simpson and Amanda Simpson on Gordon's first birthday.
Me, Gordon and Amanda at G's first birthday party.
In some much-needed good news for Amanda, she found out on the morning of G's birthday that she's been accepted into the clinical trial! She's in the PROCEED trial we wrote about here recently. This comes after an extended series of blood tests, CT scans, further imaging and a whole lot of anxious waiting.

CTV News reporter Amanda Debison met up with us yesterday to do a follow-up to the story they did about us last May. You can see the report about Gordon's birthday and Amanda's clinical trial at CTV News.

Thanks to everyone who's been helping, visiting, emailing and otherwise being awesome in recent weeks. We feel your support.

Monday, March 17, 2014

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!

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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:
http://clinicaltrials.gov/ct2/show/study/NCT01170650?term=proceed&rank=1
If you Google more, the results of the Phase 2 study can be found as well.

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