Thursday, July 10, 2014

Someone's mistake leads to some good news on Amanda's cancer

This might not sound like good news at first, but follow along.

Amanda has stopped chemotherapy immediately and is not going to be treated in Toronto further for now.

When Amanda's cancer was first discovered during her c-section in April, 2013, samples were sent for histology -- a microscopic analysis of the cells to determine the type of cancer and the grade. Tumour grade is the description of a tumour based on how abnormal the tumour cells and the tumour tissue look under a microscope. It is an indicator of how quickly a tumour is likely to grow and spread. More samples were taken when surgeons took out Amanda's reproductive organs and removed all the cancer they could find.

The Halifax pathologists determined it was a mix of high-grade and low-grade, and the doctors went about treating it as high-grade. High-grade tumours divide rapidly, so they're supposed to be more receptive to chemotherapy agents that target cells that divide rapidly. As you've read here, the tumours did not respond well to the first-line chemotherapy which included a platinum agent. Having high-grade, platinum-resistant, serous ovarian cancer is a bad, bad thing. That's why they put her life expectancy at "a year, maybe two."

When the cancer came back (or was rediscovered, really, since it probably never really stopped growing in the first place), Amanda got on a clinical trial with a drug to treat platinum-resistant high-grade ovarian cancer. It never really showed signs of working, either.

Princess Margaret Hospital, Toronto Ontario
View of Princess Margaret Hospital
minutes after we got the good news.
Amanda visited Princess Margaret Hospital in Toronto in February. They were a little suspicious about how the cancer was growing, and wanted to re-do the histology, and furthermore, do a molecular analysis of the tumours with a view toward future personalized cancer treatment.

On Monday, we went back to PMH to get the pathology report and the latest CT scan results.

The cancer is still growing, a bit, but the real shocker was in the pathology.

It's not high-grade after all. It's low-grade. Halifax got it wrong.

Low-grade cancer is still bad. It's still going to be fatal. It thumbs its nose at regular chemotherapy. That is, the kind of chemo that would work great on a fast-growing aggressive cancer would to do little more than poison Amanda while barely inhibiting the tumours.

BUT it grows more slowly. That's the good news, if you were waiting for it. It grows more slowly.

The molecular analysis also reveals that the tumours are estrogen receptor positive. That means the cells can be driven faster when they get estrogen. Amanda's ovaries were taken out last summer, but the human body generates estrogen in other ways. Even drinking soy milk can be estrogen-like enough to trick the body. But now that the docs know this, they have another drug option: an estrogen BLOCKER. They can help starve the cells by giving a pill that neutralizes any estrogen in her body.

Other treatment options may include surgery or future drugs being tested in clinical trials.

The immediate impact is that Amanda is not going to be given more Caelyx, the chemo drug she's been taking during the clinical trial. It wasn't working, and now that we know it's low-grade, not high-grade, it's not appropriate any more. The side effects she's been experiencing from Caelyx should start lifting in the coming weeks.

Longer-term, there might actually be a longer term. Instead of measuring the rest of her life in months, it could end up being years. No guarantees, of course, but the doctors actually said years. Not necessarily a lot of years, but years instead of months is SUCH a big difference, especially with baby Gordon growing every day.

She'll get to see Gordon more, because the next stage of treatment will probably be done in London, Ontario, reducing the need for frequent, expensive, exhausting trips to Toronto.

"I still have terminal cancer," says Amanda. "I will die of ovarian cancer at a young age. I still need to remain in Ontario where I can get the best care. There's still a possibility it will kill me this year. But now there's hope for some more time."

It's been such a big piece of news that we're hardly able to process it.

"Maybe I'll get to have a conversation with Gordon or walk him to his first day of kindergarten," says Amanda. "Maybe this won't be my last summer. It feels weird to think this way, and it's still not coming naturally to me. There's fear of putting the guard down, thinking I'm out of the woods for awhile. It will take some time to understand what's happened and change my way of thinking."

Amanda got a painful reminder of how serious this still is, just a few weeks ago.

She was summoned to Princess Margaret Hospital for a urologist appointment and came out with a ureteral stent. A tumour was pressing on her ureter (the tube that takes urine out of the kidney and toward the bladder) and causing urine to back up in her kidney. Halifax saw it but didn't suggest intervention. Here, they wanted to act immediately. She didn't even know it was going to happen that day and was there by herself.

I'll spare you the extended play-by-play of the ordeal, but they took a stiff rod, inserted it into her urethra, pushed it through her bladder, up the ureter, into her kidney, and then put a tube in there with a pigtail on each end, one end sticking in the kidney and the other in the bladder. From what I can gather, it was every bit as awful as it sounds, and she did the whole thing with NO ANESTHETIC. Ugh.

So, to sum up: Somehow, the pathologists in Nova Scotia got her diagnosis very wrong. Docs here say the treatment she received up until now would've been the same either way, but now that they've re-done the examination and come up with a different conclusion, the treatment and prognosis are different. She might have years, not months, and the options have changed.

Thanks, everyone, for your ongoing support and love. And big thanks to the folks at PMH who have been so, so nice and sharp. Our exhausting life has not slowed down any, but we're hoping to get a chance to breathe soon. Love you.

Monday, June 9, 2014

Drug company cancels clinical trial Amanda's been on

A startling twist in treatment as we arrive in London to pursue Amanda's cancer treatment.

After Amanda's ovarian cancer came back less than six months after treatment, she was accepted into a Phase 3 clinical trial for a new drug being tested in combination with another drug called Caelyx, aka PLD, aka pegylated liposomal doxorubicin. The new drug, code named EC145, targeted folate-sensitive ovarian cancer tumours.

A Phase 3 trial happens after the drug company has already figured out how the drug works, whether it's safe, whether it works, and before it goes to sale. It's the last stage before they roll it out and say "Folks, this is ready for prime time. We've done it."

Well, this drug, vintafolide, apparently wasn't ready for prime time. Merck, the company running the PROCEED trial, announced that its regularly scheduled review of data found that "the data suggested that vintafolide was unable to improve progression-free survival (PFS) in patients with platinum-resistant ovarian cancer."

In other words, it wasn't working after all.

Merck has stopped the trial. In doing so, it's also un-blinding the patients and doctors. We didn't know until now whether Amanda was getting the test drug in combination with Caelyx, or whether she was getting the placebo.

Guess what? She was getting the placebo.

The good news, if we can find any, is that she won't have to travel to Toronto from London three times a week every second week to get...well...a nothing injection.

The bad news, and it's kind of obvious, is that the trial that was providing her hope is ending.

The worse news, and I hate to bury the lead, is that the latest CT scan done in Halifax shows her tumours have grown. They haven't grown a whole lot, but they've not stopped growing. One of her kidneys is also looking weird. It's something called hydronephrosis and I don't know much about it.

So, what now?

Well, Caelyx has been virtually impossible to get. Problems with the manufacturer made it effectively unavailable for a long time. Years. We're told that those problems have been fixed and Caelyx is now available if the doctors decide it's what you need.

Merck is also continuing monitoring the trial. People who were on Caelyx as part of the trial are invited to continue getting Caelyx and continue being checked. So, for now, Amanda's going to keep getting Caelyx as long as it doesn't show signs of not working. I would have said "as long as it continues to work" but so far it hasn't really shown that it's working. She's been told Caelyx takes some time to start doing its thing.

We're hoping that it starts working before the tumours grow enough to put her off the Caelyx, because we really don't know what the next option would be.

For now, the treatment continues. Amanda's in the chemo chair at Princess Margaret Hospital right now as I write this. She'll go every 28 days for a shot.

The side effects have been different than what she had during last year's first treatment with carboplatin and paclitaxel. This time she's been having rashes. Nasty, weeping, blistering rashes. It's also messing with her blood counts.

All in all, life is still very intense. We're going through an incredible amount of change in an unfamiliar environment, under heavy time lines, and under a life-and-death arch. As usual, I'm amazed at how well we're all doing considering what we're going through.