Month: May 2016

Sometimes there aren’t enough rocks

Posted on by Beth Caldwell

This morning I woke to the sound of my alarm that reminds me to take my morning Xeloda. I took my pills, picked up my phone, and saw that my friend Bethany had died. She went into hospice very recently, and I knew she was pretty sick, but it still comes as a shock, as a slap in the face, every time this happens. I called her best friend and left a message for her telling her that I love her, and we texted a bit. I said a lot of swear words.

Then I texted #bestdocever to find out how my tumor markers were from my blood draw on Friday. (The results didn’t come back right away like they normally do–we’d been texting over the weekend about it as he kept checking for them.) He called and said that my hematocrit is 26, so he’s happy to offer me a transfusion if I’d like one…and that my markers are up a bit since last month, so it’s time to abandon Xeloda. My cancer is a fast learner, just like me. We’re switching to Afinitor plus Exemestane, and we’re gonna see if we can add some other drugs to maybe get me some combination therapy, motherfuckers. 

I went for my Denosumab shot this afternoon, then went for the a type and cross blood draw. Now, I’ve had quite a few transfusions since Carboplatin fucked up my bone marrow last summer, and each time, they poke me once, fill two vials, and move on to the next patient. This time, it was apparently a new tech, because he said he had to poke me twice, once for each vial. I was literally too tired to argue with him, so I just let him poke me twice, once in my arm and once, more painfully, in my hand. I told The Hubs about it after and he was horrified.

This is how I feel right now. 

Combination Therapy, Motherfuckers!

Posted on by Beth Caldwell

So, here’s the thing about metastatic breast cancer treatment: you usually get one drug at a time. We call this single agent therapy. So, like, I’m on Xeloda right now, and that’s it. We get one drug at a time, and when that one stops working, we switch to another one, then another, until all the drugs are gone and then we die. This sort-of made sense when chemo was all we had, because being on multiple chemos at once makes you feel horrible. Wait, that’s not a strong enough descriptor of what it’s like, so picture this: vomiting every day, being to weak to get out of bed so you shit yourself, rashes, mouth sores, being able to die of a cold because you have no immune system to speak of…and that’s not even all of it. 

So, since you’re going to die anyway, I mean, why would a doctor put you through all that? The answer is, they wouldn’t. Instead, they try to buy you a few months here, a few months there, without ruining the average 33 month lifespan you have after your MBC diagnosis. 

This all made sense to me until I read The Death of Cancer, which blew my mind. Do you know why Hodgkins has a high cure rate nowadays? Because some doctors said “Fuck this, let’s just poison the shit out of this cancer until it’s GONE.” And they gave patients not one, not two, not three, but FOUR different chemotherapy drugs at once. It was called VAMP for short, and guess what? It worked. Because instead of just attacking cancer one way, they attacked it on multiple fronts at once. Instead of seeing the patients as terminal and trying to make them comfortable, these doctors saw the patients as people who should get to live normal lifespans, and they set about to make it happen.

After reading that book and talking to some smart cancer researchers, I’m now convinced that combination therapy is where it’s at. I see how the story ends for my friends who run out of drugs to try, or whose bodies become so fucked up by years of continuous single agent chemo that they can’t tolerate any further treatments. Fuck that. I don’t want to slowly decline for another year or two and then die. I want to send in all four branches of the military to fucking destroy the cancer.

I realize that this requires a dramatic shift in thinking for oncologists. Y’all have been trained that single agent therapy is the way to go because combination chemotherapy is brutal. And I bet it’s really hard for any of you with a conscience to watch your patients go through what combination chemotherapy can do to them. But, let’s talk about how little the outcomes have changed by just doing single agent therapy: in the last 40 years, the average lifespan after MBC diagnosis has gone up about a year and a half, most of which is spent feeling like shit anyway because even single agent chemo is pretty shitty. That’s it, 40 years of research, 18 months in improved survival. And, now we live in the era of substantially less toxic immunotherapy drugs. The time is ripe for a change of philosophy, from extending life a few months to turning our disease from a terminal one to a chronic one.

Apparently I’m not the only one who thinks this is a good idea, because I read today that Pfizer is planning to study a triple combination of immunotherapy drugs on patients with advanced cancer. IT’S ABOUT FUCKING TIME. I hope other Pharma companies and researchers will take this approach more often, so that it can start happening in the clinical setting ASAP. 

As always, my touchstone for cancer activism is how the AIDS movement made it possible for people with AIDS to live a normal lifespan. Know how they did it? Combination therapy. But it took them demanding better drug development and getting the people in power and the Pharma companies to listen for combination therapy to come about. I’m prepared to scale the walls of the FDA or the NIH if that would make the change happen–but I hope that it won’t be necessary, and that researchers will stop seeing us as dying, and start helping us live.

Why the Accelerating the End of Breast Cancer Act is stupid and pointless

Posted on by Beth Caldwell

I’ve about had enough of the National Breast Cancer Coalition. They ignored the requests of MET UP and Metavivor to include treatment for the already-metastasized patient in their Deadline 2020 plan–they say mets research is too hard, so their plan to end breast cancer is to just prevent future breast cancers and metastases, and I guess just let those of us with mets already to die off. Think I’m kidding? Read about how they treated the one metastatic patient in the room at their Artemis meeting. It was cruel, and bullying, and silencing of a patient who is actually dying of this disease.

So, this weekend, they’re having a summit and lobby day to promote their plan that excludes treatment for metastatic patients. It’s Senate bill 746, known as the Accelerating the End of Breast Cancer Act. Sounds exciting, right? What will this bill do to, you know, accelerate the end of breast cancer? It’ll create a commission. That’s it. That’s the whole bill. A commission. Because lord knows a presidential commission is all we need to end breast cancer, amiright? We just need a few handpicked people, like, say, the director of NBCC, and suddenly everything will be fine and breast cancer will disappear. Hooray!

Did I mention that the bill says that the primary duty of the commission is to “identify, recommend, and promote initiatives, partnerships, and research within the public and private sectors, basic and applied sciences, and epidemiology that can be turned into strategies to prevent breast cancer and breast cancer metastasis.” Notice the part where they, once again, left out people who already have mets? It’s one thing for a lobbying group to reject our please for help;  it’s another thing entirely to entrench that cruelty in federal law.

This is why I oppose the Accelerating the End of Breast Cancer Act. Because it’s stupid and pointless and will literally do nothing to save my life. I hope you’ll all write, email, tweet, and otherwise contact your legislators to ask them to oppose Senate bill 746.