Could the Future be NOW?

2 06 2011

Me, modeling the DNA-themed Art Bra I created along with my mother-in-law, at the Bras for a Cause event, Royal Oak Music Theatre, September 18, 2010. The PARP Inhibitor has proven to be particularly effective in BRCA gene carriers like me. Photo by Trish Baden MacDonald.

I’ve got Google Crawler working for me day and night, when I’m working, sleeping, at the infusion center, hoping to catch a ball at a Tiger’s game, making fruit-kabobs for my kid’s kindergarten class.

When GC finds something related to the BRCA 1 or BRCA 2 genes, the PARP Inhibitor — or any of the related key words I’ve sent it out into cyberspace to fetch, I get an alert in my e-mail box. I’m particularly excited about the one that came through today.

From the article:
“This drug is a very potent PARP inhibitor. It has already demonstrated very encouraging activity as an IV formulation and now we know that the oral formulation is also active. This potentially opens up many exciting opportunities for long-term treatment for cancer patients,” said Professor Hilary Calvert, Director of Cancer Drug Discovery and Development at University College London, UK, and a pioneer in the field of human cancer therapy with PARP inhibitors. “We know that PARP inhibitors are active in germline BRCA-mutant (gBRCA) tumors, and that this activity extends beyond this group of tumors into broader patient populations in ovarian cancer and may do so in other cancers as well.

“PF-01367338 is currently in a Phase 1 clinical trial examining the maximum tolerated dose of oral PF-01367338 that can be combined with intravenous platinum chemotherapy (the kind of chemotherapy that I am on) in the treatment of solid tumors. This program is supplemented by two ongoing trials, currently using the IV formulation: a Phase 1/2 study in gBRCA breast and ovarian cancer and a Phase 2 study in the adjuvant treatment of triple negative breast cancer (the kind of breast cancer that I have). Clovis Oncology intends to replace the IV formulation with the oral formulation in these studies.”

Now, some backstory.

One of the most miraculous phrases my oncologist uses in describing the war on breast cancer and how close we are to the end is her belief that breast cancer is already a long-term manageable disease, much like, in her opinion, diabetes and hypertension.

There are so many different breast cancer treatments out there right now that if one doesn’t work, there’s another go-to drug. And while you are holding the disease at bay with one drug, others are coming online. Not over the course of years, she’s explained to me, but in days, weeks, months. In fact, the PARP Inhibitor that is part of my current treatment — and has demonstrated to be particularly effective in patients who carry one of the breast cancer genes, as I do — only came online 14 months ago!

All of this is amazing news that gives breast cancer patients, even those in Stage 4 like me, a lot of hope that long-term survival — and a good quality of life during that survival — is not a pipe dream, but a reality. My doctor has told me numerous times that while she of course has no crystal ball, she believes I will live for years. We are not looking at a prognosis of just three, six, twelve months left to live. Even at Stage 4.

I’m thrilled that I was offered the opportunity for the PARP Inhibitor to be a part of my chemotherapy regimen, along with Carboplatin and Gemzar. The PARP Inhibitor is currently a Phase 3 clinical trial drug, one that Royal Oak Beaumont worked hard to be able to offer. One I am so very blessed to get.

Right now, the PARP Inhibitor is an IV-drug only; its oral form has not yet been proven safe. During the two out of every three weeks that I receive chemo, I receive a dose of the PARP Inhibitor on both Tuesday and Thursday. But my doc has known all along that its oral equivalent was in the works — and she’s kept me updated.

Today, the article that Google Crawler flagged for me details, among other things, another huge leap in the development of an oral form of the PARP Inhibitor. What makes this so exciting is that it means the future my oncologist sees could soon be upon us.

She told me a few months ago that someday, not too far down the road, patients like me will be going to the pharmacy with an Rx for the oral version of the PARP Inhibitor, and going home with pills to take it as part of our daily meds the way a patient with high blood pressure does now.

Imagine the change in my life, in the lives of other people with breast cancer, when drugs like the PARP prove not only effective, but become available in a pill form. Breast cancer is kept at bay, my life does not revolve around trips to the infusion center and days of nausea and fatigue. We reach yet another milestone in the war against breast cancer — and continue to rachet up the quality-of-life factor.

Even better, it seems there is a whole family of PARP Inhibitors coming online that give new hope for a better future not just for breast cancer patients, but prostate and other cancer patients as well.

I am certainly not a medical doctor by any means, but I keep myself a well-informed layperson. Check out the article. The future could be upon us.

My job is to hang in there — even on days like last Thursday, when I was sobbing as I waited for my ride to chemo, because I simply did not want to go. I did not want the infusion or the sickness that follows, that I already know all too well.

But my job is to go and keep on going, no matter what. To take advantage of the very best science and medicine has to offer while I await the next best. Until someday, my disease is in full remission and I’m able to keep it that way.

As I was walking to the ballpark Tuesday evening with my friend Jodi, I said, “You know, Jodi, even if this was the best we could do, the best we could ever do — two weeks on, one week off — I still have a darned good quality of life in between infusions and I’d take this gladly over the alternative, any day of the week.”

But my bet is, I won’t have to.

Copyright 2011, Amy Rauch Neilson

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Hats Off…Rhonda Traylor’s Story

12 08 2009

Rhonda Traylor and me, in the moments following our graduation from Antioch University McGregor, June 29, 2008

Rhonda Traylor and me, in the moments following our graduation from Antioch University McGregor, June 29, 2008


I met her in a sea of long black robes and mortarboards. I’d just come down from the stage, where I’d had the privilege of speaking in front of 3,000 people at The Schuster Center in Dayton, Ohio. It was June 29, 2008 and finally, after four years, the birth of my son and a battle with breast cancer, I was about to receive my master’s degree from Antioch University McGregor. It’s a day that was a bit surreal because there had been a time not so long ago when I thought this day might not ever come — in the days following my breast cancer diagnosis.

But it did. And I did it. Not only did I walk across the stage to receive my degree, but I did something that just a few years ago, I wouldn’t have thought possible. I told my story, my family’s story, the story of the BRCA 1 gene, before a crowd of a few thousand. (To read the Speech, “The E-Turn in Life: Being the Difference” in its entirety, see the Speech button at the top of the homepage.)

I shared just how our gene-positive status had impacted the women in my family, from my grandmother to my mother, my sisters, my niece. I shared the power and the wisdom that can be extracted from even the most difficult circumstances life throws at you — and that I do, indeed, believe it is my responsibility to reach as many people with my story as I can. I never imagined for a moment that some of my fellow BRCA 1 and 2 peers were sitting in the audience, listening to my words.

Then something even more amazing happened. I returned to my seat and the music for the processional began. A long line of graduates in flowing gowns and tassles passed me en route to the stage.

Suddenly, a young African-American woman stepped out of line. She walked the few short steps to my seat, stood in front of me, removed her cap, revealing her bald head, and whispered, “BRCA 1” in my ear. She gave me a hug, then quickly replaced her cap and made her way up the stairs and across the stage.

Following her lead, graduates began to step out of line on their way to the stage, hugging me and sharing a few quick words of inspiration. The outpouring of love and appreciation from my fellow graduates — many of whom were strangers — was one of the most amazing and powerful moments of my life.

I caught up with that young woman following the ceremony. Her name is Rhonda Traylor and she is BRCA 1 positive. On that day, she was in the midst of her battle against breast cancer.

“I didn’t know if I would be able to make it across that stage,” she later told me, as she was so fatigued by the chemotherapy treatments. “They had a wheelchair ready for me, in case I needed help. But I was determined to make it!” And she did.

Rhonda and I still keep in touch and I am thrilled to say that she has finished her treatment and is doing well. She is an amazing person — bright, funny, glass-is-half-full, even on the darkest of days. And how ironic that, that day, Rhonda thought I was the hero for my willingness to share my story.

But I, I have a different version of that day. It’s the story of a young woman fighting breast cancer who willed herself to make it up the steep steps and across that long stage to receive her diploma. That is a true hero. To Rhonda Traylor I say, “You go, girl!”





Guest Blog: BRCA2 and Don’t Know What to Do

10 06 2009
Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Please meet Jenny Fink, a BRCA 2 carrier, who pens Blogging ‘Bout Boys. (Check it out — I’m guest blogging over there tomorrow.)

Breast cancer has haunted me my entire life.

From the time I was little, I knew that breast cancer stalked my family. My maternal grandmother died of breast cancer when I was just five, and one of my maternal aunts had breast cancer sometime when I was a kid. I don’t remember the details, but I do remember my mom ducking into the bathroom to see her scar.

My own mother didn’t develop breast cancer until I was an adult, a married twenty-something living out-of-state. Still, I remember seeing my mother’s mastected breast, dyed green and slice for analysis. It’s not the kind of thing you forget. (My mother, a nurse, specifically asked to see the samples, and I was in the room when they wheeled them in.)

It wasn’t until she was diagnosed with ovarian cancer ten years later that we learned about our genetic mutation. Despite the fact that we knew we were at risk for breast cancer, no one had ever bothered to inform us that ovarian cancer is sometimes linked to hereditary breast cancer.

When we learned about the link between breast and ovarian cancer, I pushed for genetic testing. I’d had enough of health care professionals pushing my concerns under the rug. If I tested positive, I reasoned, I’d have absolute, solid proof of my risk status – and no one could ever again brush off my concerns by saying, “Yes, but has your sister had breast cancer?”

That was a little over two years ago. Finding out I had a BRCA2 mutation was really no big deal; strange as it may sound, for me, the bigger deal would have been finding out I was negative.

Doing something about it has proved to be a little harder.

First, I was nursing. My youngest child was not yet a year, and I was determined to breastfeed him to completion. Continued breastfeeding, I reasoned, was best for both of us.

Now, though, he’s been weaned for the better part of year. It’s time to schedule a screening, but our health insurance recently changed from full coverage to a high deductible ($5,000!) policy. I’d scheduled an appointment at the regional academic medical center to discuss screening and my options, but cancelled it when I realized I’d be paying out of pocket. My plan now is to wait til my annual physical (covered at 100%) and to ask my family doc to recommend a mammogram (which, I think, should also be covered.) As for the MRI I should probably have – well, I’m not sure how I’m going to pay for that just yet.

My situation is not unique. How many of you have a mutation, but limited insurance coverage?

I’m not sure yet what I’ll do regarding prevention; if I’ll try Tamoxifen (though I recently learned that some antidepressants basically disable Tamoxifen) or if I’ll schedule preventive surgery. The scary thing is that I’ve already calculated that surgery may be the cheaper route: if I decide on a prophylactic mastectomy and oophorectomy, I’m pretty sure I’ll meet my $5,000 deductible. If I simply decide to do screening each year… each year, I’ll have to pay $1,500 out-of-pocket for an MRI.

How do you cope financially? Has insurance coverage (or lack of coverage) influenced your healthcare choices?








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