Sep
11
It turns out I didn’t start my new chemo yesterday after all.
Basically the government won’t cover me for any more than the standard course of 17 Herceptin treatments. The 17 treatments I’ve received to date are worth about 60K USD (and are completely free in Canada) but to go beyond the standard course I would have to show that my disease has not progressed during that time. It has. However some lumps have stabilized and my doctor is contesting the CCO’s decision to cut off my Herceptin, but she isn’t hopeful she can get around it (at least not fast enough) so unless my husband’s drug plan covers it, it’s Sayonara Herceptin.
This is not as bad as it sounds. The new treatment is Lapatinib, which is a targeted therapy for HER-2 positive cancers. I am a big fan of targeted therapies. (Say it with me: Apoptosis!) The only reason my doctor didn’t put me on it first is because she didn’t want to have to take me off Herceptin, knowing it would be hard to get me approved for coverage to go back on it again once I stopped. So she wanted to start me on a chemo that I could have in conjunction with Herceptin, and not a treatment that would replace it.
I have heard really good things about Lapatinib, and I actually feel ok about this new development. Like maybe just for once the universe is intervening on my behalf to make sure I get the right treatment (instead of the universe just screwing with me, which is what it seems to have been doing for the past 18 months or so.) I am genuinely optimistic that this treatment will be the one that works.
On the downside, I’m going TWO full weeks without treatment because none of this will be sorted out until next week. On the up side I will be in much better shape for the Weekend To End Breast Cancer Walk this weekend, having skipped chemo yesterday. I’ve raised almost $9000.00!!!
Jul
22
Since my first day on the clinical study was a long one, so shall be this post:
· Arrive at hospital 10 am (very civilized)
· Go to blood lab and have seven vials of blood extracted. Lab technician sings He Ain’t Heavy He’s my Brother (“The road is looooong….”) I think this is perfect. Have been humming it all day.
· Go up to top floor of hospital and am welcomed, weighed & moved into my room: window view East, wireless connection from my bed, very nice accommodations, service excellent. (Americans have no idea what they’re missing.)
· Clinical trial nurse (her name is Naz) goes over some questions with me, I answer hers, she answers mine. She is not rushing me, she explains everything.
· Oncologist (her name is Dr. Elser) comes to give me a physical exam & ask/answer more questions. Again, everything is explained, nothing is rushed. I like these women.
· I go for a chest x-ray because I have a little cough (this clinical study stuff is a hypochondriac’s dream!)
· Naz hooks up my ECG leads and proceeds to do 4 or 5 ECGs, about 10 minutes apart. All are normal. This is our baseline.
· I eat some hospital food (the low point of my day)
· Naz sets up an IV in my arm for the administration of flushes & drugs (Panobinostat, followed by Herceptin.)
· We are GO for drugs.
· Naz accesses my port to take blood samples. There are seven (or eight?) vials to be filled with my blood today. This is after the seven vials taken this morning. (No wonder I dreamt of vampires last night. Specifically, of a really glamourous, wealthy vampire couple in their fifties, kind of like that couple in the old TV show Hart to Hart, except slightly less goofy and with much darker pastimes.)
· Friends Michelle and Angelique arrive bearing my favourite chips, trashy magazines, candy, novels by my favourite writer, little French cakes, Thai food, tidbits of gossip and lots of really good energy (the high point of my day)
· Friend Carol (who recently completed participation in a clinical study herself) drops by to visit, bringing yet more gloriously trashy magazines!
· Naz pops in periodically throughout this little salon of visitors to switch IV bags and make sure I’m feeling ok. (I am laughing my head off and eating treats, clearly feeling ok. Maybe she wants to make sure I’m not overdoing it. Or that I don’t secretly want these people to leave. I feel that Naz would make it happen if I gave her the signal: people would be briskly and professionally ushered out the door and into the elevator before they knew what was happening. I am growing very attached to Naz.)
· My IV is finished.
· As my friends take their leave I start to feel dizzy. Crashing from candy-and-cake-induced sugar high? Abject sorrow at their departure? No: side effect of study drug.
· Naz is all over my blood pressure, repeatedly checking it, notifying my oncologist, and hooking me back up to the IV with a bag of saline.
· Dizziness abates, blood pressure normalizes.
· Blood tests & ECGs resume, and will continue hourly until 10:20 pm.
· I blog.
· Uh oh blood pressure down again. More IV fluids. I am SO HYDRATED!
· I blog.
· Blood pressure levels out.
· My husband is coming soon, bringing a supper prepared by our dear friends who have a fantastic gourmet food shop and catering business. These are good people to know at any time, but given that powdered mash potatoes and suspicious-looking meatloaf just landed on my table, I’m especially grateful to them right now.
After supper I want my husband to climb into this bed beside me and read for a while. Even though we frequently battle over the far more expansive real estate of our bed at home, there’s something nice about someone being squished up beside you in a hospital bed. As long as it’s someone you love. Not just a random orderly. Or, god forbid, another patient.
Dashing husband has arrived, bearing outrageously delicous-smelling food! Double hooray!!
Jul
21
First of all, THANK-YOU!!! Thank-you for all the comments, cheers, high-fives, happy tears, and general whooping-up of it right alongside me as I celebrated some good news for a change. Would you believe I have some more good news to share?
I got into the clinical study! I’m officially a Panobinostat Rat!
The health of my platelets, white blood cells, heartbeats and whatever else they measured has been deemed study-worthy, and my new life as a lab rat begins tomorrow! My bag is packed and I check in to hospital at 10 a.m. for three days of fairly intensive treatment and repeated testing of heart and blood. They’ll be testing hourly — absurd, crazy amounts of incessant testing, testing, testing – and they’ll keep at it for something like 8 straight hours before they let up a little. Then, after a bit of sleep we start all over again with the treatment (Panobinostat & Herceptin) and, yes, you guessed it: a little bit more testing.
But I don’t mind. Recent history has taught me that it might be better to have my body watched over obsessively than left to its own devices anyway. Plus if this stuff works, who cares? I say bring it.
(OK, I say ”Bring it” now, but I do reserve the right to whine and complain about the constant poking/injecting/scanning etc. as soon as it becomes unbearable. Which could be as early as, like, 2pm Eastern Standard Time, Thursday.)
I don’t know if I’ll have internet access so blogging may not be possible, but if it is, stand by for all the gory details. And wish me luck!!
This morning, at media gathering about cancer research at Princess Margaret Hospital in Toronto, I was lucky enough to hear the scientist Tak Mak speak a bit about his work. Mak is the director of the hospital’s breast cancer centre — but you might know him as one of Chatelaine’s “Men We Love,” from our November issue last year.
To explain how our understanding of breast cancer has advanced over the years, Mak used this analogy:
“Imagine a big bowl of fruit. That’s what breast cancer is like. We didn’t know that before — that’s what research has taught us. We now know that there isn’t just one type of breast cancer; instead, there are apples and oranges and bananas and pineapples. In the past, we used the same drugs for everyone, and we didn’t understand that a treatment might do an excellent job with oranges, but nothing to bananas.”
Mak went on to say that researchers have come a long way in understanding that the aggressive breast cancer that hits younger women behaves completely differently than the type that typically affects older women. He described the newest treatments for breast cancer as “sharp-shooter drugs” — drugs that target the specific cells, instead of just killing (or removing) everything in sight. An example of these “sharp-shooter drugs”? Herceptin, which our formidable blogger Leanne Coppen wrote about this week.
Feb
22
In this month’s issue of The Atlantic there is an interesting article on Herceptin, the biological antibody used to treat cancers like the one I’ve got – meaning those that are positive for the Her2 onco-gene. My course of 17 Herceptin treatments began with my 4th round of chemo and will wrap up sometime at the end of the summer. A long road maybe, but being treated with Herceptin is much easier to bear than chemo: there are no major side effects. Just glorious cancer-smashing goodness.
But the best thing about Herceptin – and something that was only discovered within the last 5 years or so – is that if its used to treat early stage Her2 positive breast cancer, it transforms it from one of the deadliest to one of the most beatable breast cancers, increasing your chances of survival from about 50% to close to 95%. Pretty nice odds, I like to think. In fact, these odds were probably the most reassuring thing I heard during those first few harrowing months after diagnosis. My godfather is a medical scientist, and in his words, “If you’re going to get stuck with breast cancer, this is the kind you want to get stuck with.”
What I didn’t know until I read the article is that in many countries my chances of being able to access this life-saving treatment would be limited by my ability to afford it, or by my government’s policies. The author of the article talks about the struggle of New Zealand’s early-stage breast cancer patients to gain access to Herceptin, where it was only approved for advanced stage metastatic patients, not as a “cure” but as a life-prolonging measure. She also talks about the U.S., where her own standard course of 17 Herceptin treatments cost her insurer about $60,000. (What if she had been among the 47 million uninsured Americans?)
And then there is a very brief mention of Canada:
“Most of Canada’s provinces approved Herceptin for early-stage patients within a few months of the May 2005 reports, much faster than the usual pattern.”
Way to go, Canada! That’s definitely something I’ll try to remember next time I’m shoveling snow and wondering why I live in this country.
Read more here: http://www.theatlantic.com/doc/200903/postrel-drugs
