Sunday, May 18, 2014

Where's my clinical trial?

reblogged from

Where’s my clinical trial?

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

ImageNext week I’m going to ASCO in Chicago, the annual meeting of the American Society of Clinical Oncologists. I’ve reviewed the agenda. Interesting and promising research will be reported on, not just in breast cancer but across the cancer disease spectrum.

One thing I didn’t find? Research papers about me, about those of us who are stable or have been NED (no evidence of disease) for years. We are defying statistics and maintaining that fragile, illusive state of tumor dormancy. Isn’t any researcher interested in running my genomic profile, sampling my blood and tumor tissue, establishing a baseline of a mets patient who is doing well? Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.

Dr. Susan Love in speaking about her research foundation, often cites an anecdote about aviation experts in World War II. They were studying downed planes until someone suggested this: “Why not look at the planes that stayed in the air? ”

This is the 50th anniversary of ASCO and visiting reveals milestones in cancer research and treatment. Yet, there is still much room for improvement. 40,000 women and men die every year from breast cancer—metastatic breast cancer. That number is essentially unchanged in the last decade. 110 people each day, every day, a daily catastrophe that doesn’t make headlines. 110 people dying every day; 770 dying every week; over 3000 every month– from the cancer, which is still viewed as one of the ‘better’ cancers to get. We can and must do better. Even Nancy Brinker tweeted this week: “So much more work to do together to end MBC.”

So, ASCO researchers, I am ready and willing. Study me. Collect my data. I know there are others out there in my situation. Last month I spoke at a program at NYU and a few people in the audience spoke up and said they had been NED for years. Sign us up, ASCO. We’re ready to help.

I’m not a researcher or clinician, just a patient advocate, a woman living with metastatic breast cancer, who is attending the ASCO 2014 meeting and will take every opportunity to ask: Where’s my clinical trial?

Friday, May 2, 2014

I showed them!

There will be no TV at the shore this summer. I wish I could say that this was done for high-minded reasons. Vacations should be a break from your normal routine. Summer is for relaxing and enjoying the beauty of the outside world. Read a good book. Sit on the porch, listen to the birds, sip your morning coffee. Enjoy a beautiful sunset. Remember back to the good ole days, when there was no televison at the bungalow and we never gave it a second thought.

These are all good things. But, alas, the decision to not have TV involves a more complicated tale. Comcast serves the Jersey shore and with all the news stories about the conglomerate merging of Comcast and Time Warner, I already had a chip on my shoulder when I called Comcast to restore my full time service after the winter hiatus. I also violated my rule of always calling back at least twice or even three times when dealing with customer service because it's always a different answer. 

Comcast or Verizon are the only choices for internet service at the shore. Suffice it to say I switched to Verizon very huffily before I made the second call to Comcast. Verizon only has the Dish for TV and who wants to be bothered with that? When I relayed the story to Gary in excruciating detail... then he said....and I replied...and he checked with the supervisor...and I did a slow burn...., he merely raised his eyebrows and refrained from comment. (We have been married a long time)  I ended with the conclusion that we would need more than the basic package anyways, which was ridiculously priced and I could see from the slight downturn at the corners of his mouth that he wanted to whisper, "What about ESPN?"  Memories of my mother's admonition echoed in my head: "Cut off your nose to spite your face." I prefer the more modern rationale from my son. "Mom, TV is obsolete--you can stream everything online."  Let's hope the DSL delivers the promised speeds!

Be sure to stop by and see me this summer.  Just be prepared for the simple life. Cards, anyone?