Busy busy busy

I haven't blogged in more than a week because life has been so BUSY!

Soon I'll tell all about the photo shoot and short documentary that took over our lives for a couple of days on my 13th metsiversary.

Then I'll brag about my fantastic 13th metsiversary party!

But for now, let's just say that besides the above, I've had the usual round of medical appointments, my week off chemo, a visit from Rik's high school photography teacher and good friend, a November-like storm that took out power in many places, including us. Two nine-hour power outages here with an hour or two in between where we could make reset clocks, etc. Thank goodness we bought a gas range and were able to have a hot dinner, even in the dark!

We played Scrabble by candlelight and didn't realize the power had been on for almost 30 minutes, until Rik let the dogs out and said, "Hey, there's a light on over there!"

Last night we ushered at the 5th Avenue Theatre for a touring performance of Matilda, the London musical based on Roald Dahl's book. I thought it was fabulous, especially the talented, mostly very young cast.

More soon, including a cancer update. Tomorrow I start Taxol with Carboplatin. That's a big combo, but given that I sailed through Adriamycin, I hope to do the same with Carbo. Said with a strong Balkan accent: I am strong like bull!

My AHA moment

A week or so ago, I did a live interview for Mutual of Omaha. They run public service-type announcements on television featuring regular people talking about their "AHA Moment."

MofO seems to want their interviewees to articulate something amazing, challenging, or out of the ordinary that somehow affected our lives in a big way. The employees travel around the USA seeking speakers and also interviewing passers-by. There is one person to interview both random folks and those who are prepared; one person to run the camera; one person as a greeter; and the driver of the van.

I wrote earlier that Gilda's Club Seattle had invited their members to speak, and I said yes. It's a good thing too, because the other person who agreed woke up feeling unwell and Anna Gottlieb, the founder and executive director of GCS, rushed over to the Seattle Center to tell her AHA Moment about deciding to start a Gilda's Club here.

You can view my story here and Anna's here. Remember to turn up the volume!

If you like my little video (I got on my personal hobbyhorse about the government's lack of funding for advanced cancers), please feel free to share it with others.

To paraphrase from Anna, you too can pursue a dream against all odds, and make your dream come true.

Technical vs. conventional wisdom

If you're into the breast cancer rates of recurrence conversation (as I am), check out these two articles for some totally different takes.


The full Medscape article is here.

The Mystery of a Common Breast Cancer Statistic -- Solved?
Nick Mulcahy
August 18, 2015

A commonly cited breast cancer statistic — that 30% of all early-stage breast cancers will progress, despite treatment, to deadly metastatic disease — appears to have no strong contemporary evidence to back it up. 

Nonetheless, the statistic appears widely. For example, it is cited in an academic report (J Intern Med. 2013;274:113-126), in a breast cancer charity report, in a pharmaceutical marketing piece, and on a major cancer center website. 

In short, the 30% figure is conventional wisdom — despite the absence of an authoritative epidemiologic source. 

But is that statistic accurate and reflective of current clinical reality? And should clinicians repeat it to patients? Perhaps more importantly, does the statistic really matter? After all, the treatment of women with early-stage disease will not change whatever the statistic is, correct? 

Medscape Medical News went in search of answers to these questions and found angry patients, a clinician author trusted blindly by a lot of people, and special access to a common database that, in fact, appears to solve the mystery of the proportion of early-stage patients who progress to metastatic disease. 

Our story begins with multiple women with metastatic breast cancer who are dismayed or angry about the fuzziness and mystery of the 30% statistic, and have said so online.

I would like to know the true stats of how many breast cancers come back no matter what the hell we do for treatment.

For example, in a 2013 post on the breastcancer.org bulletin board, "SusansGarden" from Gig Harbor, Washington, wrote: "I would like to know the true stats of how many breast cancers come back no matter what the hell we do for treatment." 

The topic has been discussed repeatedly by "metsers" for a few years, but a recent blog post got a lot of attention. 

On July 21, metastatic breast cancer patient and blogger Ann Silberman, from Sacramento, California, examined the 30% statistic. For the individual patient, "none of this matters," she wrote. "You will relapse or you won't." But Silberman, who unsuccessfully looked for a credible source for the statistic for 7 months, added that "it's harmful to mis-state things, use scare tactics, and otherwise try to make a bad thing worse." 

The post, with its reference to scare tactics by prominent breast cancer organizations, including Komen for the Cure, prompted a response from the Metastatic Breast Cancer Network (MBCN), a respected patient advocacy group. (continues on pages 2 and 3.)

NOTE: This next article is NOT the  2005 CME review on metastatic disease referred to above and published in the Oncologist by prominent medical oncologist Joyce O'Shaughnessy, MD, from Baylor University in Houston, which is quoted above.

Images from the full scientific abstract from PubMed are here. 

Breast Cancer Res Treat. 2013 Jan;137(2):449-55. doi: 10.1007/s10549-012-2366-0. Epub 2012 Dec 6.
Effect of HER2 status on distant recurrence in early stage breast cancer.
Hess KR1, Esteva FJ.Author informationAbstract
It has long been recognized in breast cancer that the effect of hormone receptor (HR) status on recurrence rates varies over time and with the site of recurrence. However, there is relatively little in the literature on the effect of human epidermal growth factor receptor 2 (HER2) on recurrence patterns. We wanted to assess whether the effect of HER2 status on the risk of distant recurrence changed over time and/or with HR status and whether these relationships varied with site of recurrence. We retrospectively studied 11,011 women diagnosed with stage I, II, or III breast cancer after 1997 who had data on HR status and HER2 status. 20 % were HR negative and HER2 negative (so-called "triple-negatives"), 7 % were HR negative and HER2 positive, 64 % were HR positive and HER2 negative, and 10 % were HR positive and HER2 positive. The estimated overall cumulative incidence of developing distant metastases is 20 % at 4 years, 30 % at 8 years, and 36 % at 12 years. The 12-year cumulative incidence was 23 % for bone, 16 % for liver, 14 % for lung, 13 % for distant lymph node, 10 % for brain, and 8 % for pleura. After adjusting for potential confounding factors, the nature of the effect of HER2 on recurrence rates was found to differ markedly across the sites of recurrence. For brain and pleura recurrences, the effect of HER2 depended on HR status in ways that significantly changed over time. For bone recurrences, the effect of HER2 did not depend on HR status, but did change significantly over time. For liver and distant lymph node recurrences, there was a significant effect of HER2 status that did not change with time or HR status. For lung recurrences, rates did not significantly vary with HER2 status.PMID:

 

23225147

 

[PubMed - indexed for MEDLINE] 

PMCID:

 

PMC3544467

 

Trip east

Rik and I went on separate journeys east recently. He made a presentation and received an award at a national geography teachers' conference in the other Washington (and he already took the award to school, so I can't share a photo with you). I went to see my mother, sister and brother-in-law and spent time at the New Jersey shore with them.

Here are highlights from my trip:

The board game Monopoly was based on the Atlantic City boardwalk.

By the sea, by the sea, by the beautiful sea...

When you're part of our family, you get TAN!

Oh those Jersey tomatoes!

Sis, me, Mom in a terrible selfie

View from the banana whip place

Walking on the beach with my sister

I'm on Ventnor beach!

Canadian cherries for Rik

And to be sure I enjoyed every moment, I ate frozen custard daily! This Jersey delight is like soft-serve ice cream but SO MUCH MORE DELICIOUS.

Day 1: Daddy O's chocolate/vanilla swirl

Day 2: Rita's coffee and chocolate (shared between Mom and I)

Day 3: That place on the pier for frozen banana whip 

Day 4: Sunny Daze chocolate/vanilla swirl with chocolate dipped coating

Day 5: Royale Crown (Hammonton) fresh peach custard with chocolate dipped coating -- THE WINNER!

Latest brain MRI results

I had a brain MRI last week or so and Dr G called me today to review the results. Things are worse. I have new mets, some larger mets, some smaller mets.  He told me things are not so hot in my cerebrum and cerebellum, although he did mention that all my years of dancing are helping my cerebellum stay healthier, if that's the proper word.

This is hard news to swallow. The good side is that the Taxol might reduce these mets, and put off having to have whole brain radiation. This is a procedure Dr G has always told me might make me "stupid." He only mentioned it as a possibility but of course I think I'm smarter than the average bear and losing some of that freaks me out.

Rik spoke to Dr G on Tuesdsy during my chemo and confirmed that in his opinion I'm improving, am more focused, since starting Taxol. That makes me feel better. Who knows me best but my husband?

Nonetheless I'm spending the day in bed and on the sofa, sleeping, reading, cuddling dogs and listening to a huge thundershower. Maybe tomorrow I'll feel up to more activity as I wrap my head around more brain mets.

Stress + anxiety = anxiety + stress

The past week has been filled with stress and anxiety, no matter how you look at it.

Gilda's Club Seattle asked, and I offered to give an interview when Mutual of Omaha's AHA Moment van was in Seattle on Tuesday. If you've not seen these commercials, check out the site. (I don't know when or if my interview will be broadcast, but will try to post if they tell me.)

At first I thought I'd talk about cancer. Then I thought I'd talk about my cousin E, who died last week at the age of 90+. I asked Rik to quickly email me a photo, since the email reminder said to bring something along. But they meant something to hold in my hand, not a digital image. Then I changed my mind again. Everyone has a loss to share. What would make E's death my AHA Moment more powerful than my living with metastatic cancer?

With Anna Gottlieb, founder and executive director of Gilda's Club Seattle

A gift from Mutual of Omaha - my very own clapboard

In the end I talked about my cancer, how long it had been in my life. Mostly I spoke about how my recent knowledge of the US government's lack of funding of all research into all metastatic cancers via the National Cancer Institute indicates how little the lives of our citizens seem to matter to our government. The interviewer didn't seem to care for this topic much, but I got very passionate about it. It was a bit of a stress-filled morning.

On Tuesday afternoon I saw my specialty dentist about the ache in my jaw and numbness in my chin. She took x-rays but nothing showed up, as nothing had shown up on the recent CT of the right side of my jaw. My anxiety continued to build, as this could mean anything from TMJ to increased activity in the BRONJ spot in my jaw, to more active brain mets. Or anything else. And it hurt to open my mouth and eat.

Thursday brought my weekly support group plus a visit with Dr G. The usual mixed bag of possibilities opened up yet again. Stress. Rik told Dr G he thinks I've been mixing up my conversation recently. I told Dr G about my issues with typos and not being able to think of the proper word in a sentence (I call this "my feeling stupid"). These symptoms, plus the mouth/jaw and chin pain, could indeed mean anything. Combined with the rise in my tumor markers, Dr G decided I should start Taxol within 24-48 hours, and schedule another brain MRI soon. I had a brain MRI on June 10th, which revealed nothing unusual. Dr G also said I should start raloxifine, an estrogen blocker which somehow I'd never had.

The terrible traffic for the stupid Seafair activities in town caused many of the patients scheduled before me to arrive late. Therefore we waited two and a half hours to see Dr G, spent an hour with him, walked over to the hospital to fill the scrip for raloxifine, and didn't get home until almost 7 pm.

More stress, more anxiety.

On Friday the Swedish Cancer Institute squeezed me in for my first dose of Taxol. I felt okay on Friday afternoon, but took a nap anyway. New drug, a nap is in order. I should get the Taxol once a week for three weeks, then take a week off. This lower dose also should be more tolerable.

On Saturday it was so very hot here that I took a five hour nap with the air conditioner. This was definitely the summer for such a purchase. I have a brain MRI scheduled for this week, as approved by my health insurance company. We'll see what that reveals. At least my jaw hurts less

Finally, today my dear friends D and C came over for brunch. While we were catching up with one another, I truly had an AHA moment: I realized that the stress and anxiety of the past week could easily have caused some of the symptoms I was so worried about. The typos, the conversational idiosyncrasies and worries about new pain might have all converged to cause me more worry and nervousness.

I actually have tolerated the Taxol very well so far, with minimal side effects except my naps. I hope this means that my trip to see my family on the east coast will come off as planned. Plus I hope this means less stress now that I have a plan. This who know me, know that I excel at planning.