Monday, July 28, 2014

This Crushing Fatigue

I had chemo last Monday. Every three weeks, indefinitely. 

Last Wednesday, I went to a yoga class and ran into one of my regular instructors in the studio's lobby. She asked how I was doing. "Okay, just a little exhausted from chemo this week," I told her. "Oh, is this just maintenance stuff?" she asked me. "Sort of like that," I replied. Most people don't understand that my hair could be growing, I could be in remission, and still need chemo. Most of the time, I don't get into it.

Until scientists find some better detection methods and can tell me definitively that there are no breast cancer cells left, I will probably be on some sort of drug to keep this at bay -- just in case. As well as I'm doing right now, I am not willing to risk taking this safety net away, even if I have been flattened -- crushed -- by the fatigue of it.

According to the website, cancer-related fatigue is common: 

What is fatigue?
Fatigue can be confused with tiredness.  Everyone gets tired.  In fact, it is an expected feeling after certain activities or at the end of the day.  Usually, we know why we're tired and a good night's sleep will solve the problem.  Fatigue is less precise, less cause-and-effect.  Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep.  It can be acute (lasting a month or less) or chronic (lasting from 1 month to 6 months or longer).  Fatigue can have a profound negative impact on a person's ability to function and quality of life.

What is cancer-related fatigue?
Cancer-related fatigue (CRF - sometimes simply called "cancer fatigue") is one of the most common side effects of cancer and itstreatments.  It is often described as "paralyzing."  Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest or sleep.  It may not end - even when treatment is complete. 

What I'm on is not as harsh as the toxic chemo-chemo I used to be on. This is no Taxotere or Carboplatin. But it is still cumulative (or I am just getting older and less adept at recovery). After 14 months of Kadcyla and almost three years since my diagnosis, I am wiped out. 

I don't have the words for how tired this chemo makes me. I was never much of a morning person before cancer, but now I am groggy until mid-afternoon. I am cranky and ornery and feel decades older than my thirty-five years. I feel like I'm moving through mud. I am irritable and short-tempered and I cry at the slightest frustrations because I don't have the energy for a more measured reaction.

Anemia isn't to blame; my blood counts consistently look okay, which was confirmed again this morning. I'm getting what most experts say is enough sleep per night: about 7.5 hours, give or take, depending on steroids or Quinn's sleep gymnastics or my anxiety levels. It's too hot to hike, but I'm still making it to a fairly intense yoga class three times a week, most weeks. (Though sometimes I think I go to yoga to spend most of my time in child's pose, resting on my sweaty mat.) I finished my 39.3-mile walk.
Am I overdoing it when I feel well? Is it being a parent to the energizer bunny? Is it the heat of the Phoenix summer? Am I not drinking enough water? Enough coffee? And the worst: is the cancer growing again?

I'll feel better in a couple of days. I'll make it to yoga again this evening and spend less time in child's pose than I did last Wednesday. Quinn and I will have the day together tomorrow, inventing new ways to beat the heat (I'm thinking ice-skaing lessons for both of us might be in order soon). We'll go to California for Chris's 20-year high school reunion.

And then I'll have a week and a half of feeling nearly normal before this cycle begins again. Just enough time to almost forget how sluggish I'm feeling now. 

Are you sidelined by chemo-related fatigue? How do you combat it? What other side effects do you take on in order to keep on keepin' on?

Friday, July 25, 2014

Around the Web

Here are the articles that were passed along to me this week. Thanks to my husband, Chris, and my friends Andrea and Kathryn for sharing them. I had chemo on Monday, so I've been in my typical fog since then, a fog that isn't helped IN THE SLIGHTEST by it being 114 degrees outside. So we're heading out of town--again--this weekend, just a couple of hours north of here to a place where there are natural springs and waterfalls and it will be twenty degrees cooler than here. So, mid-nineties, but with WATER. Which sounds downright magical at the moment.

{Photo credit}

A Better Way to Diagnose Cancer?

"The current study puts immunosignatures to the test, evaluating the technique’s ability to identify multiple disease types. The team first “trained” the system to calibrate results and establish reference immunosignatures using 20 samples each from five cancer patient cohorts, along with 20 non-cancer patients. Once reference immunosignatures were established, the technique was tested in a blind evaluation of 120 independent samples covering the same diseases. The results demonstrate 95 percent accuracy. . . .

Specifically, in one experimental trial, researchers were able to detect and distinguish a complex, heterogeneous disease – stage IV breast cancer, relative to four other cancers and healthy controls. In the second trial, 14 separate diseases were distinguished from one another, as well as from healthy controls, through immunosignatures. Among the cancers tested were three different stages of breast cancer, four different brain cancers, two pancreatic diseases, ovarian cancer and two different blood cancers."

Targeting the "Seeds" of Metastases

"If perfected, this technique could eventually allow doctors to do the same: use cancer cells isolated from patients' blood to monitor the progression of their diseases, pre-test drugs and personalize treatment plans accordingly."

And Some Positive News on the Clinical Trial Front . . . 

(from April)

. . . Led to This

"Investigators for the biotech say they tracked a 33% improvement over placebo in disease-free survival."

They are looking for FDA approval in the first half of 2015.

As always, if you have anything you think I should add here, please let me know.  

Monday, July 21, 2014

Conversations with My 3-Year Old

One of the things that has surprised me most about parenting is how curious Quinn is. I expected the "Why, mama?" questions, just not quite so early. Lately, he asks about EVERYTHING. Here is a typical conversation for us:

Q: "Can Oliver come over to play?"

Me: "No, honey, not right now."

Q: "Why, mama?"

Me: "Because it's late, and he's having dinner with his family."

Q: "Why, mama?"

Me: "Because that's what people do at the end of the day -- have dinner with their families."

Q: "Why, mama?"

Me: "So we can catch up with each other and talk about our days, and eat healthy foods together."

Q: "Why, mama?"

Me: "So that we stay close as a family and have energy to grow and play."

Q: "So can Oliver come over to play?"

And then I just stare at him in disbelief.

Another conversation I've had to have with Quinn recently? Why our bodies are different, a chat made more interesting given my scars, my port, my tattoos. Read here on Scary Mommy to see how I handled it.

Friday, July 18, 2014

Life Savers

These buildings are where so much magic happens. A few weeks ago, my friend and Avon Walk teammate Shelby, a researcher at Genentech, asked me if I'd like her to try to arrange a meeting with some of the trailblazers in the Her-2+ research field while I'd be in town. "YES, PLEASE!" I think I wrote back immediately.

Shelby orchestrated that meeting, and it was one of the most memorable experiences of my life. Last Friday afternoon, my friend (and another teammate) Ginelle and I drove down to the Genentech campus, arriving nearly 45 minutes early because I was so geeky excited about what was about to happen.

One of the researchers is a guy Shelby met through Genentech's onsite daycare. His son is in class with her children, and when she found out he was on the development team for Kadcyla (the drug I've been on since last May), she might have told him my entire story and thanked him profusely and wept a bit.

Which is pretty much how I reacted when I met him last week.

I was so in awe of this guy, who is around my age, who has a 2-year-old son and was so amicable and open about his research and proud to show off his lab and just amazingly COOL as I stood there trying to think of just one of the million questions I had for him while also holding back tears.

He told me his dad died of cancer at just 50 years old.

He told me he's known as "the combination man." He plays with molecular combinations and tests them against breast cancer cells, most of them Her-2+ like mine were. He was a member of the small team that piggybacked a potent, bomb-like, extremely toxic chemo drug to Herceptin and got it to work, to deliver this bomb inside cancer cells that over-express the Her-2 protein without destroying the cells around them. He continues to play with combinations that will kill cancer more effectively and with less toxicity to the patient.

The other scientist I met is a true pioneer. When she came walking down the hall about twenty minutes into my conversation with the combination man, I could no longer hold back my tears. I don't remember if I hugged her. I was trying to maintain some composure.

She's been at Genentech most of my life, researching tirelessly (and also raising three kids). She was one of the primary developers of Herceptin, an antibody that binds to the Her-2 protein, signals those cancer cells to stop dividing, and tells the immune system to destroy them. Hands down, Herceptin has been one of the most important developments in treating breast cancer. She said it has been the best thing she's done in her life.

Mine, too.

I asked what was on the horizon because I'm always hoping to hear about the next big breakthrough, although I also understood that they couldn't go into too many specifics for so many reasons. They told me they're investigating what causes resistance to treatment. They're evaluating other drug combinations (a Kadcyla/Perjeta clinical trial is already underway). They're translating their successes with breast cancer therapies to other cancers. They're collaborating with researchers outside the U.S. They're working with regulators to speed things up where it might be possible.

They're energetic and enthusiastic and dedicated to their work. They're also scientists, and realists, and fully understand the wiliness of the beast they're up against.

I can't thank them enough for their help in slaying it. I hope they--and I--can continue killing cancer for many, many years to come.

Thursday, July 17, 2014

Around the Web

I've about recovered from the beating my body took last weekend. I admit I haven't been monitoring the headlines as closely as usual between walking almost forty miles and traveling with a toddler. But here's what caught my attention on the web last week.

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Researching targets for triple negative breast cancers

"If her approach is successful, we may have a new way to deliver drugs with precision: not just to cancer cells, but to any type of diseased cell or organ with a distinctive pattern of proteins on the surface."

And some not-so-great news from the clinical trial world.

"The long-awaited results showed that adding lapatinib [Tykerb] to adjuvant trastuzumab [Herceptin], either concurrently or sequentially, does not increase disease-free survival compared with use of trastuzumab alone in women with early-stage HER2-positive breast cancer."

We may someday be able to predict who will benefit from Tamoxifen. . .

. . . eliminating unnecessary side effects for so many women.

"A gene signature identified using a new approach has the potential to be used in the clinic to predict which patients with estrogen receptor-positive breast cancer will benefit from tamoxifen therapy after surgery, according to data published in Cancer Research, a journal of the American Association for Cancer Research."

And what if we eliminate hormone receptors altogether?

New developments for treating estrogen-receptor positive breast cancer from one of my favorite companies, Genentech.

More research suggesting we are overdoing it with mastectomies

"'Most patients have very minimal increases in life expectancy, one to seven months," Tuttle said. And that difference was spread over two or more decades, especially in the younger women, he said."

No regrets here.

Finally, are antioxidants harmful to cancer patients? 

Let the conversation begin (or continue). When I was seeing my naturopath regularly, he suggested I have infusions of Vitamin C to combat cancer growth, but my oncologist strongly advised against it. I went with my oncologist, and now I'm rethinking the supplement I add to my occasional morning smoothie, too. Do you take supplements? What are your thoughts on antioxidants? Does this study change your mind at all?