Summertime and MBC

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It’s the time of year when I start thinking about cleaning up the back yard, heating the pool, and focusing on summer entertaining. We have a small home, so it’s our season to celebrate outside with friends.

This year I have a new plan – if anyone appears to be drowning in my pool, I’m going to focus on preventing future incidents by teaching everyone on the deck how to swim immediately! After all, the person drowning could be saved and then be hit by a bus, so she’s probably a lost cause. 

It makes sense, right? I mean, it is how we fund cancer research. We don’t focus on saving the dying – we focus on how to “prevent” the disease. Why shouldn’t that be the model how we approach other life-or-death situations? Heart attack? Have everyone within earshot has to change their diet. And pass the bowl of aspirin, stat!

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The Tax Man Cometh: California Breast Cancer Research Program

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Yet another in the alphabet soup of breast cancer organizations, right? Wrong!

There are countless organizations – and even more letters – in the world of breast cancer. A few stand out, and this is one of them! The CBCRP is much like the DOD’s CDMRP (aka “the DOD”), for those familiar with THAT effort. It is a California state research program that seeks to fund breast cancer research that is, in many ways, unique to California. With our unique perspective, diverse environments and ethnic diversity, we can do things other states can’t. CBCRP has two foci – investigator-driven research and program-initiatives objectives. CBCRP funds high-risk, high-reward research throughout the state.

I am honored to serve on the committee that helps administer the program, and I have a front row to the unique research we fund. CBCRP priorities include a focus on addressing primary prevention, understanding breast biology, and improving detection, treatment, survival and outcomes. There is a particular interest in the role of and unequal burden from environmental exposures, as well. Additional, CBCRP places a premium on the involvement of advocates in research, and reserves funds for community-initiated proposals.

It is the largest state-funded initiate of its kind! More

Another Day – Another Blessing

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I suspect that there are times when I utterly annoy those around me with optimism. Not that I don’t have my moments when I simply fall apart, as most of us do, but I am a perpetual “glass half full” sorta person. It helps me feel better when I can see the silver lining, focus on the up side of whatever I am experiencing. Today I had an incredible opportunity to help educate about metastatic breast cancer and meet some amazing fellow travelers. We attended a focus group looking at the side effects of MBC medications. And we put it ALL on the table (except as I now think about it, weight gain! oops) – fatigue and poor sleep, hair loss and loss of sex drive, perpetual hot flashes and more.

What I found most interesting is our immediate bond. In the 10 minutes we sat together in the waiting room, it was already clear that the facilitator was going to have a bit of a challenge in keeping us focused. There was so much to share, so much to commiserate about, and so much to celebrate. Without exception we each found a new spirit in our lives after our MBC diagnoses, and I think it’s fair to say we each preferred the paths and attitudes we’ve adopted since our diagnoses. We all seem to be living more fully on whatever time we have!

So with gratitude for my new friends, and those who brought us together, I’m signing off on yet another great day!

My Cup Runneth Over: A Belated AACR Update

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Filled with blessings and making a virtual mess on my kitchen counter, my cup runneth over these days, so I am LONG overdue in sharing my incredible experience at the AACR (American Association for Cancer Research) Annual Meeting as a participant in the Scientist <->Survivor Program.  

AACR: AN UPDATE

If you’ve been to AACR you will totally get this. If you’ve been to SABCS, you’ll come close to getting this. If you’ve never attended a medical conference as an advocate, you may not get this, but rest assured most of us conference junkies really don’t either.

The seemingly simple task of creating a conference schedule is a Herculean effort. The full AACR Program guide is – I kid you not – 724 pages. Sure, there’s an app for that, but mastering the categories in which the app sorts sessions is beyond my chemo-addled mind. All this to say, my primary goal was to collect as much information as I could about the latest advances in MBC and I’m sure there were sessions I never even found. In addition, my AACR’s Scientist <-> Survivor Program team was tasked with the responsibility with preparing a presentation on clinical trials. Plus Jody Schoger (of #BCSM fame) and I presented a poster on Breast Cancer Advocacy. The challenge: too few hours in a day! I had greater success on the clinical trials front than I did with MBC breaking news, but below you will find a hodgepodge of updates I hope you find helpful.

The most significant headline for MBC patients: More

It’s the Friday of Memorial Day. Do You Know Where Your Tumor Block Is?

Remember me? I never call, I never write…and I do apologize. It’s been a bit crazy here on so many levels. The good news is I am feeling well, there’s no significant cancer news so I’m jumping right back into the fray because, well, I have to…but know that I’ve missed you!

 

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I’m coming up on a 12-year cancerversary of sorts – my bilateral mastectomy was the first week of July 2002. Early enough in the month that the residents would be fresh and eager and before they had learned to sleep on their feet during rounds. Round about July 7, but I would have to dig out papers to confirm that. It’s good when some details float away…. In fact, don’t normally acknowledge this particular moment in my cancer biography, but it has been brought into the spotlight thanks to my desire to have my tumor sequenced. The back-story goes like this:

I’m not yet convinced that my third-line therapy, everolimus and exemestane (aka Afinitor and Aromasin) are working. If they are, they’re taking a lot longer than I would like, but that’s another story….

This story is about if/when I have to move on to the next treatment (yeah, that “if” is there to protect my sanity for the moment), I’d like the direction that genomic sequencing can provide. Do I have mutations in the PIK3 signaling pathway? What about the CDK4/6 pathway? Or any one of the myriad of DNA corruptions that could guide us as we enter the world of personalized medicine.

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