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





Still Nothin’!

20 02 2011

Don didn't even ask me why I needed him to take a picture of the BACK of my head!

My husband Don and I have decided this matter of hair has a theme. Still nothin’, we say to each other after doing a “hair check” first thing in the morning. He’ll also sing it to me whenever he sees me doing the “little tug” (hey, maybe I should trademark that move or something) to test the strength of my roots. Still nothin’, just the way Jo Dee Messina says it in her hit, My Give a Damn is Busted.

Indeed, my gutsy moved paid off yesterday. Calling and making an appointment for an up-do earlier this week with my stylist Jennifer from The Perfect Image Salon in Belleville didn’t jinx me in the least. In fact, it saved my spot — Jennifer is one busy girl — and not only lifted my tresses, but also my spirits.

Jennifer was shocked when I walked into the salon yesterday. She knew I’d already started chemotherapy treatments.

“I saw your name on my schedule — followed by the notation: “Up-Do,” and I had to look twice,” she said. “I couldn’t believe it!”

Believe it. It’s Sunday morning and I’m closing in fast on that Tuesday if-you-haven’t-lost-your-hair-by-now-you-most-likely-won’t deadline.

The wedding was a beautiful affair, held at the Royal Oak Music Theatre, the same venue where I modeled for the Bras for a Cause Benefit September 18, 2010, and where I’ll be for this year’s Bras for a Cause, September 17, 2011.

The bride, Pamela, and I share something very important in common — we both love the color yellow. Sunshiny, bold, bright yellow. How can you look at the color yellow and be anything but happy?

Pamela has a flair for style and an artistic bent. The centerpieces were jars of all sizes and shapes, collected over the past few months after the final bit of jam or the last pickle, the labels removed, the glass scrubbed. Each was filled with a different variety of yellow flowers. I chose one that had surely once been called home by several dozen baby gherkins, filled with tiny, fragrant flowers whose name I just couldn’t put my finger on.

I set them on my nightstand and drifted off to sleep. This morning, it came to me the moment I opened my eyes. Our room was filled with an enchanting scent.

Honeysuckle. Those delicate, bell-shaped blossoms were Honeysuckle! That’s long been one of my favorite scents for body lotions and bubble bath, but I don’t recall ever having seen it in a bouquet.

I breathed in deeply. It would be just like God to create a flower that’s not only the most perfect color in the universe, but whose scent is nothing short of heavenly.

Copyright 2011, Amy Rauch Neilson





The Cause is Plenty of Reason for the Bras

17 09 2010


Tomorrow evening, I’m going to stand up in front of a crowd of 1,000 people at the Royal Oak Music Theatre in my bra.

Before you begin thinking that this is not reality, but perhaps an anxiety-provoked nightmare — let me explain. It’s a very special bra, it’s for a great cause, and I won’t be the only one.

Saturday night is the second annual Bras for a Cause event, featuring Art Bras modeled by breast cancer survivors. There will be 22 of us modeling the 70 Art Bras donated by local celebrities, artisans, survivors and their family and friends. Last year’s event raised a whopping $50,000 for Gilda’s Club of Metro Detroit.

I was going to wear one of the bras that had already been created. Then, I had an idea.

I was sitting around one day thinking about DNA and the double helix — everyone does this from time to time, right? — when it hit me. I could design a bra featuring the double helix!

Great Idea. Now, how to get it from my head and onto a brassiere? Enter my mother-in-law, Margaret Neilson, also a breast cancer survivor and one smart cookie.

I showed her my idea on paper and within a couple of days, she had created the pattern and sewn the beads onto a bra in the shape of the Double Helix. Then, she and I added red feathers from a boa, sequins, test tubes I’d ordered from an online lab (they probably think they’ve got a new customer!), and red trim.

Wallah! One DNA double-helix bra!

But the wheels in my brain couldn’t stop turning. The bra was the beginning of a Science theme — complete with lab coat, Geek glasses (I found them in the Geek section at the Halloween store!), a five-foot-tall inflatable DNA double-helix beach toy, and music choice: Thomas Dolby’s Blinded Me With Science. Not only am I a science geek, but this theme is particularly meaningful to me as the form of breast cancer I carry is indeed in my genes — identified as the Breast Cancer 1 gene (BRCA 1).

It was an exhilirating moment when we hot-glued the last of the trim on the bra and held it up. Then, I began to worry.

I worried about how I’d look on stage. I’m not model thin. Then I happened across the words from some of last year’s models, reminding me of what I already know: It’s not about being model thin. It’s a celebration of life — beating breast cancer and coming out on the other side healthy enough to create such a bra — and model it in front of 1,000 people.

Through a silent and live auction of the bras as well as items donated by businesses and celebrities (think autographed Red Wings’ jerseys!), as well as through ticket sales (100 percent of proceeds go to the charity), I’m playing a small part in raising money to support other young people diagnosed with the disease in their 20s and 30s.

And that is plenty of reason to strut a runway in a bra!








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