August 24, 2015

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.

August 19, 2015

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 Med2013;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 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. 
 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 KR1Esteva FJ.Abstract
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:
[PubMed - indexed for MEDLINE] 

August 17, 2015

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!

August 14, 2015

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.

August 02, 2015

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.

July 24, 2015

Mouth pain

I've posted before about ONJ (osteonecrosis of the jaw), a rotten side effect of taking too many bisphosphonates to strengthen my bones over the years, or in my case, too much Xgeva.

For the past ten days I've experienced annoying pain in my ONJ spot of exposed bone on the roof of my mouth. I saw the dentist, and she wasn't sure what might cause that pain. She doesn't think I need another root canal. The ONJ spot hasn't changed in appearance. So Dr Amy spoke to Dr G and together they decided I should have a CT of my mandible (jaw).

I had the CT and it revealed -- NOTHING. No tumor, no new ONJ, no nothing. But I still have the pain. I changed pain meds from Vicodin to fentanyl patches left from earlier this year. The fentanyl made me woozy and high at first; I didn't really sleep last night. But today I'm not woozy and the pain is gone. I see Dr Amy again next week.

I hate to judge myself on what to take, but since I have the fentanyl on hand and Dr G had prescribed it, I'll take it. And it works!

July 21, 2015

If you know me...'ll know why I couldn't resist sharing this comic strip.

Pearls Before Swine by Stephen Pastis, 7/21/2015

July 20, 2015

A great article

Cancer Patients Start Protest Group Like ACT UP

Nick Mulcahy
July 15, 2015
The pink culture of breast cancer is about to get an infusion of red hot.
A small but growing group of women with metastatic breast cancer and their supporters have formed MET UP, an activist group modelled on the confrontational AIDS Coalition to Unleash Power (ACT UP) and sharing the same inspiration of anger, rebellion, and fellowship/sisterhood.
"MET UP is…committed to direct action for a viable cure for breast cancer. We protest and demonstrate," reads a portion of the group's mission statement, which was recently posted online.
A changing of the guard — and of attitude and tone — is needed in advocacy, suggests the group. "The time for honey is over. Break out the vinegar. It's our turn now," the group states.
MET UP has its eye on some major powers-that-be: the federal government, Komen for the Cure, and sexploitative breast-related charities, said founding member Beth Caldwell, 38, of Seattle, Washington, a married mother of two small children whose initial breast cancer diagnosis was metastatic disease.
"We're very much in our infancy, but we have big plans," she told Medscape Medical News.
One of the roots of the rebellion is frustration over the fact that, despite 40 years of "breast cancer awareness," the average survival with metastatic breast cancer has not changed and remains 3 years. "We're not making any progress in keeping people alive," said Caldwell.
"There are many members of our group who are very angry at Komen," she continued, referring to the influential and controversial breast cancer organization.
Here's one of the reasons for the rage, said Caldwell: In 2013, Komen had $125 million in revenue but gave away only $38 million in grants (and even then, some grants were not for scientific research). "As an organization that pitches itself as 'for the cure,' they are not doing enough to actually seek the cure," she summarized.
Komen has also reportedly kept women with metastatic disease off the podiums of its rallies because the specter of death is an emotional downer, as highlighted by Medscape Medical News.
"We are excluded from the club," says Caldwell about the general aversion that pink culture — with its mantra of "beating" breast cancer — has for the people who are inexorably destined to die of the disease.
So, is MET UP — à la ACT UP — planning to storm Komen headquarters in Dallas? Not now, said Caldwell, but "Komen is definitely on our radar." The activists recognize the group has new leadership and they are waiting to see whether grant funding priorities change.
The first major direct action planned by the fledging organization is a nonviolent "die-in" on October 13, which is Metastatic Breast Cancer Awareness Day, in Washington, DC, on the lawn of the US Capitol with 1430 men and women to symbolize the daily death toll of the disease worldwide.

July 14, 2015

The latest treatment idea

I saw Dr G yesterday and we discussed a number of things.

My pneumonia is resolving. Yay! Evidently the pneumonia vaccine I received in 2013 didn't cover this strain, but it's too soon for me to receive another vaccine.

He had my tumor tested for the androgen receptor and the result came back positive. He'll contact Dr Julie Gralow, a local, renowned breast cancer expert, to review the result with her, and if she approves, I'll start bicalutamide (Casodex). Although this drug is usually given to men with prostate cancer, it might be effective for me.

Dr G also had my tumor tested for micro satellite instability. The results showed the tumor is stable, which you would think would be the "right" response. But this means the newest therapies might not work for me and I would not be eligible for such clinical trials. It might be worthwhile to re-test my tumor for ER/PR status. If it's changed to triple negative, which isn't too likely in my opinion, it might change my eligibility for said trials.

If Dr Gralow does not recommend bicalutamide, I will start Taxol in a little over two weeks (or, as Dr G puts it, after Tisha b'Av). I wouldn't say he's exactly superstitious, but it makes a certain kind of sense not to start new chemo during the lead up to a major Jewish fast day.

July 10, 2015

When cancer organizations get it totally wrong

It's worth reading about how Young Survival Coalition, Stupid Cancer and Fuck Cancer missed the message in their corporate partnership with Spencer.

An Open Letter to Young Survival Coalition

UPDATE July 10: YSC has taken down the Facebook post about this campaign, but Spencer Gifts is still listed as a sponsor on the YSC website. I haven’t received a response from them to this post yet.
Dear YSC:
I’m an under-40 woman living with metastatic breast cancer. I’m your demographic, the one your programs are designed to help. And you HAVE helped me–I even go to a support group for young metsters organized by a YSC volunteer. Which is why I think I’m the most disappointed in you, even more so than Stupid Cancer or F*ck Cancer, for being involved in this.
See what it says at the top of this? That’s right, it says “Boobies make me smile.” And of course it says it twice, because we all have two boobies. I see what you did there! Hahaha, how clever! 
Oh wait, no it’s not. It’s actually horribly offensive.
I don’t have two boobies. I only have one. They cut off the other one because it had an enormous tumor in it. And the most horrible part of that is, I’m STILL going to die of metastatic breast cancer.
There have been plenty of studies done about how the sexualization of breast cancer hurts breast cancer patients. First off, supposedly funny and edgy slogans like “save the tatas” and “boobies make me smile” trivialize a disease that kills 522,000 women and men worldwide every single year. The death toll in the US has been 40,000 per year for decades. How is the thing that kills those women supposed to be funny? How are those of us who will die of this disease supposed to feel about this joke?
Secondly, focusing on our disease originating in our breasts, rather than seeing us as whole people, dehumanizes us. And it makes women feel that if they have a mastectomy, they’re no longer worthwhile, or feminine, or real women. When I lost my breast, it almost broke me emotionally. Almost. This sort of campaign brings me right back to that feeling, and it does the same for many other women who have had their breasts amputated in a desperate attempt to save our lives–because our lives are what matter, not our breasts. 
Campaigns like this do real damage to breast cancer patients. And I know that you know this, because right next to where this image appears on the YSC Facebook page, you’ve got a video about how breast cancer surgery impacts women’s feelings of self-worth. 
I expect this kind of insensitivity from a porn industry executive trying to get some cheap publicity. But not from you, YSC. I expect you not to make women who have had a body part amputated feel worse about themselves. I expect you to know that this type of campaign is absolutely the worst kind of cause marketing. And yet, there is your logo at the bottom of the poster, and there’s this image proudly displayed on your Facebook page.
Speaking of your Facebook page, several of us pointed all of this out to you in comments on that photo there. Let me quote your complete non-apology here:
“We apologize if this post was offensive. We would like to clarify that the “Boobies Make Me Smile” slogan is not a YSC slogan, it is the name of Spencer’s Foundation. Our bracelet is called “Survivor Strength.” We partner with Spencer’s to promote breast health education among their young consumers and over the last 8 years have reached countless young women to empower them to be their own best health advocate. It is always our goal to inform and empower young women with breast cancer, and we’re sincerely sorry if this post was insensitive.”
If?!?! If this post was insensitive? If this post was offensive? It’s your goal to empower young women with breast cancer, while you trivialize their disease and marginalize those of us who have lost a body part to it? Really? And how is the fact that Spencer’s foundation is called “Boobies Make Me Smile” a reason not to be offended? You’re telling me that you actually decided to partner with an organization called “Boobies Make Me Smile?” Are you kidding me? 
I know you need money to support the important programs you run. We all understand that. But you undercut the power of those programs and the support you give to young women with breast cancer when you turn around and partner with an organization whose very name is offensive. How can we take you seriously after this? How can we believe that you really have our backs, when you turn around and throw us under the bus to make a quick buck?
I beg you, before further damage is done, to withdraw from your partnership with Spencer Gifts and give them their dirty money back. If you don’t, I know an awful lot of young women who will no longer be able to support you in good conscience, myself included.
Beth Caldwell