The Assertive Cancer Patient

More on T-DM1

Well, as a woman with advanced breast cancer who HAS RUN OUT OF TREATMENT OPTIONS, I have to disagree with Breast Cancer Action on this one. 

See the letter re: T-DM1: T-DM1 Breast Cancer Action Letter

I understand the arguments the group advances, I even agree with them up to a point. But the whole approval process is incredibly long and cumbersome, and getting drugs outside that process--despite what you might think when you hear the term "compassionate use"--is almost impossible, in my experience. 

As I said in an earlier post, I don't think this will hurt my ability to get the drug in a Phase II trial. There is a trial opening here in Seattle soon, unless this news somehow makes the folks at the UW less enthusiastic about getting the trial through their own approval process. But I don't see why that should be. 

I know the risks associated with this drug. (I haven't posted them yet, but I will.) There is a very long list of quite nasty potential side effects. I also know that some women have lived for a year or more on this drug and others have seen their cancer go into clinical remission. I'll take my chances.

See also: T-DM1

@ Jeanne Sather 2010. 

T-DM1 News (???)

I'm not sure what this news item about T-DM1 means for me, if anything. T-DM1 is the new drug that I plan to get in a clinical trial once I've finished my current cyberknife treatments. 

I think it's the right drug for me--pretty much the only drug, really--and there is a trial opening at the UW/SCCA soon (although THAT is held up in a committee, I'm told). 

In any case, the drug maker failed to win "accelerated approval" for T-DM1, "because all available treatment choices for metastatic breast cancer ... had not been exhausted."

Well, here is one woman for whom all options HAVE been exhausted. But I'm not going to panic, because I don't think this news affects the clinical trial, but it might affect how soon the drug is available outside of a trial. And of course if it works for me, I'm going to want to be able to get it. 

I have an appointment with my medical oncologist, Dr. Lee the First, in a week or so, and I'll dump this one on him. 

Read: No FDA Fast Track for T-DM1

Read more: T-DM1

Feeling cynical about drug companies? You're not alone. Genentech will lose an estimated $1 billion a year in sales of Avastin, now that its effectiveness in treating breast cancer is in doubt. Gotta make that income up somewhere. 

@ Jeanne Sather 2010. 

Laughing at Cancer

The photo: Yes, that is my mastectomy photo--the right side of my chest where I used to have a breast. Not funny. 

Showtime has a new series which it is billing as a "cancer comedy," starring Laura Linney as a suburban wife who life is "rocked" by a cancer diagnosis. 

Yeah, cancer will do that. 

A more important question, perhaps, is: Is cancer funny? What is the point of a comedy series about a woman with cancer?

Not that I want to give too much importance to any TV show--my world will not be "rocked" by this program, which I most likely won't watch since we don't have cable and I don't watch TV anyway except for the one or two shows that I watch on my laptop through Hulu. 

What I think:

There is a place for humor in the cancer world, but that humor is INSIDER HUMOR, among us cancer patients, and not to be shared with the TAB (temporarily able bodied) who make up the rest of the world. Sometimes we share our humor with special doctors and nurses, the ones who really get it. 

It's kinda like white people using black language and humor, and getting it wrong. It doesn't belong to them, and they should leave it alone. 

The only alternative to our insider humor that I can see is laughing AT the cancer patient ... and I won't be tuning in to watch that.

See: The Big C

Watch it: The Big C

Also: Cancer Humor

@ Jeanne Sather 2010. 

Cancer? Expensive? They're Kidding, Right?

Here's another one of those "duh" headlines. Or at least it's a big duh to those of us living with the disease of the crab. 

Or should we call it "the crabby disease"? The "deadly crabby disease"?

See: Cancer Is the World's Costliest Disease

Doesn't that make me feel special?

If I had a little more time this morning, I'd slide into a rant on The Cancer Industry and where the money really goes. I don't have all the hard numbers that I'd like to have, like how much money goes directly to cancer patients to help them deal with their illness, and how much goes to marketing the various competing cancer centers, and how much it costs to put on one teeny tiny clinical trial ... 

Consider it ranted and carry on. 

Support this cancer patient:

@ Jeanne Sather 2010. 

'Running With Fear' Is Back Online

I recently searched for this story that I wrote for Seattle Weekly back in 2003, and couldn't find it. 

But I am happy to report that it IS still live, although at a different link than before (I need to fix that on my profile page). 

I think this was a good piece, and it was a cover story that put my face on newspaper boxes all over town for an entire week (Younger Son loved it, Older Son was embarrassed and hoped his friends wouldn't notice). 

It's strange to reread it now, even though I'm proud of it, because so many things have changed in seven years. The biggest change: My fear is gone. 

Read the Seattle Weekly story: Running With Fear

See also: Where Did My Fear Go?

Support this blog:

@ Jeanne Sather 2010. 

Metastatic Cancer: Does It Matter What You Eat?

My breast cancer spread to my bones something like eight or nine years ago, and ever since then I've wondered if all the information about supposedly cancer-fighting foods applied to me. 

My e-mail box and this blog attract a lot of press releases from cancer centers, universities, and the like, and I ignore most of them, but when I get a press release announcing new research on a food or natural substance that supposedly helps prevent cancer, I usually e-mail the sender and ask if this research applies to people like me, people who already HAVE cancer. 

The reply, typically, is: We don't know. This study didn't look at that. 

Finally, however, here is a study that seems to have addressed that question. Thank you, Ohio State University!

Granted, so far the research has only looked at mice with breast cancer tumors (my kind of cancer, even!), but it showed that a substance in broccoli and brussels sprouts caused the tumors to shrink. 

Now, I like broccoli, and some years I even grow my own, so it is no hardship for me to add a bit more broccoli to my diet. I especially like homemade cream of broccoli soup--this requires a blender, but other than that it is really simple to make. 

I don't have a link to this research online, but it was published online June 29 in the journal Cancer Prevention Research. 

The Metastatic Cancer Patient Diet

So, back to my original question: Does it matter what we folks living with metastatic cancer eat? If you are a member of this exclusive club, please feel free to weigh in below, in the comments box. I would like to know what you think. 

For now, let's leave supplements out of the discussion, and just focus on real food. We can have a conversation about supplements another day. 

My personal feeling is that I should eat as healthy a diet as possible, because while my cancer is taking up most of my attention, it is also possible for me to develop another health condition or disease, and some of these are related to diet. 

For me, this means eating a vegetarian diet, with only organic, hormone-free dairy products. I eat as much produce, preferably fresh from my own garden at this time of year, as my GI tract will tolerate. 

I do pay attention to which foods supposedly have the most anti-oxidants, because I figure I might as well hedge my bets there, too. 

And then, just as I was working on this post, in comes an e-mail about antioxidants with this headline: 

Antioxidant benefits a myth?

Argh. If you live long enough, and I'm talking about life in general, not life with cancer, you will see eggs go in and out of popularity, then butter vs. margarine and back again to butter, and so on with coffee and many other foods. Types of sugar. Oils. Beef is out right now, but who knows? It may come back into dietary fashion, although I won't be eating it, regardless. 

Of especial interest to me is that the headline above refers to an article written for food marketers--those folks trying to sell you products with the word ANTIOXIDANTS slapped across the label. We'll come back to this when we discuss supplements in more detail. 

Here's the link: Antioxidants?

@ Jeanne Sather 2010. 

 

Need Some Help With the Housework?

An informal poll of my friends and readers reveals that most of us live in houses (or condos, or apartments, of course) that are not as CLEAN as we'd like them to be. 

Who can mop floors on a weekend when you are throwing up after chemo? 

And many of us just don't have enough "good hours" of energy in the day to do everything that needs doing. Now, this is frustrating, and I've tried various things--but wringing housework help out of young males is worse than pulling teeth, I can attest to that, and their cleaning standards are about the same as a 5-year-old's. 

My friends have been coming over to help me sort out the junk room that used to be my bedroom, but they are all busy people, and our progress with this is slow. 

So, my first brilliant idea: I asked my young friend Megan (a college student) if she would work for me about six hours a week, helping with chores, errands, and dog walking. Of course, I am paying her. 

She said yes, and I think she is going to start next week. This is fantastic--the bathroom will finally be clean!--plus, I need the company. We're going to break the six hours up over two days, and I'm already dreaming about what we'll do first--mulch the garden? Hang some photos that have been waiting for over a year? Scrub the bathroom really well? Of course, we'll walk Connie ... 

Cleaning for a Reason

Just about the time I was e-mailing Megan to ask if she was willing to work for me, someone sent me info about an organization called Cleaning for a Reason. I'd heard of them before and maybe even blogged about them, but I never got Dr. Lee to fax them a letter confirming my cancer status, so I wasn't able to take advantage of this free service. 

Basically, if you have cancer, these folks will send you a housecleaner or cleaners once a month for four months. Sounds like a good deal to me. Here's the link: Cleaning for a Reason

If you do use their services, please e-mail me (or leave a comment below) and let me know how it went. Thanks. 

@ Jeanne Sather 2010. 

Cancer News Roundup: Or, Why I'm NOT an Organ Donor

The AP has a story out of New York about a man who received a kidney transplant, and developed cancer that apparently came along with the kidney. He has since died, of cancer. 

The woman who donated the kidney had uterine cancer, a female cancer, although she didn't know it, and the autopsy that showed her cancer was completed days after the transplant surgery. 

It's a complicated story, and there will be lawsuits flying left and right. You can read about it here: 

Man dies of uterine cancer after transplant

And that, dear readers, is why my driver's license no longer lists me as an organ donor. Check your license and see what it says. If you did die in a car accident, it's not likely that your family members would forget to mention your cancer history, but who knows? Play safe. 

Obesity and Your Grocery Store

Here's a story that confirms my observation when I was at Costco late on Saturday afternoon a couple of weeks ago. I never shop at Costco, but we were there to replace a tire that had blown out on the freeway, and as we waited for the tires to be changed, we hung out in the food court near the exit.

And I have never seen so many obese adults--and kids!--in one place in my life! Well, here's a story that explains why more obese people shop for groceries at Costco, although Costco wasn't included in the research. 

Pricey grocery stores attract skinniest shoppers

Another News Headline to Say "Duh!" To

I know, I live in the cancer world, so many of the things that I think are obvious are not obvious to the rest of the world. However ...

This headline, I think we can all agree, should be met with a resounding "DUH!!!!" from all of us. Here's the headline: Emotional Needs [Are] an Important Part of Cancer Care

Don't we know that by now? And aren't oncologists and oncology nurses watching for "distress" in their patients at all times? And doing something about it?

Having said that, I know that the answer is actually no--many oncologists and oncology nurses are not watching for distress, whether it be stress, anxiety, depression, or uncontrollable fears. I know this from some of my own experiences with people who work in the cancer world, and I know this from the people who write to me and tell me their stories. 

I only post a fraction of these stories on my blog, because if I posted all of them, I wouldn't have time to write anything else, and this blog would be renamed The Whining Cancer Patient--with the caveat that I think we should all complain more when we aren't getting the care we need. 

And--this is only my opinion--I think cancer patients should be more willing to shop for the right doctor and to change doctors if they end up with one who isn't right for them. I know this is hard to do--and stressful--but in the end it is so worth it. 

After Dr. L left Seattle for Tucson, I was--briefly--under the care of two different oncologists before I found Dr. Lee. Neither of these two doctors listened to me, or "got" me, and they caused me incredible stress. 

Anyway, even though I think this research is long overdue, I applaud the author for taking this issue seriously and researching and writing about it. Of course, the author is a nurse, and a woman. 

See: Emotional Needs an Important Part of Cancer Care

See also: Cancer Horror Stories

@ Jeanne Sather 2010. 

Tell Me Something I Don't Know ...

I try not to be too snarky about the cancer news and general health news that arrives in my e-mail box everyday, but this one seems pretty ridiculous, and it's from the AMA ... 

The headline is: The Four Unhealthy Behaviors that Combine to Increase Death Risk

And the first paragraph of the story says, "Four unhealthy behaviors--smoking, lack of physical activity, poor diet, and alcohol consumption--appear to be associated with a substantially increased risk of death when combined, according to a report ... "

As I said, tell me something I didn't know. And is there anyone in this country who is reasonably literate--or even watches TV--who doesn't know this? 

And then there is the flip side--I didn't smoke, I exercised, ate an excellent diet, and drank very rarely, and yet I developed an aggressive breast cancer at age 43. Also no family history and no known risk factors, except that I used to sleep with a light on at night. (Still do, actually.)

So explain that one, AMA.

If you want to read the story: 

Four Unhealthy Behaviors  

I guess what I'd like to see from the AMA is some progress in helping people change their unhealthy behaviors--lose weight and keep it off, stop smoking, get an exercise program going, and curb drinking. But the medical and health-insurance industries do a very poor job there. 

How many insurance plans pay for any of the above? And how many doctors know how to help their patients change their risky behaviors? Other than embarrassing them, which is not a proven method for behavior change. 

I'd also like to see the AMA take on the food industry, because a huge percentage of the American diet, especially the food children eat, is NOT FOOD. How about those processed meats? Can you spell colon cancer?

@ Jeanne Sather 2010.