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 cancerprogress.net 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?

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15 Responses to Where’s my clinical trial?

  1. Shannon says:

    Thank you! I totally agree with you. I was diagnosed at age 39 with ER/PR positive, HER2/neu negative IDC and as of May 2013 with minimal treatment (lumpectomy, 2 lymph nodes removed, 15 rounds of radiation to T5, hysterectomy, and anti-hormone treatment, I am in complete remission. They need to figure out what is going on with our bodies, the ones who are NED, to see if there is a mechanism at work that could help the others.

  2. Sheila K Smith says:

    I too want my clinical trial. I have talked to each Doctor that I could at each conference I have been to for MBC. I was first diagnosed in 1995 at 36, metastatied to bone in 2002. I want to donate my body to be studied. No one knows anyplace that has a study for that. WHAT? I don’t understand.

  3. gspeers says:

    I totally agree. I will be 11 yrs with bc mets. Dx at age 45 at Stage IV, ER/PR +, Her2 -. Still bones only (!). You would think someone would be interested in what allows a select few to survive 10+ yrs!? I would only disagree with you that 10 yrs is a long enough period of time to constitute calling bc mets a chronic disease. But there are likely medical standards for that. I do agree that since less than 5% survive 10 + yrs it is not correct to classify this as a chronic disease today. I know the Drs want to offer hope but….

  4. Nikolette Battle says:

    As a stage IV metster who hasn’t had your luck and is approaching my 3 year Cancerversary with only the option of Halaven available to me (I am just completing AC chemo and have run through all other options), I wish research would be done on the lucky few like you. Kathy Rich made it 19 years and do we know why? No and that’s wrong.

  5. katherinembc says:

    Reblogged this on ihatebreastcancer and commented:
    Ginny Knackmuhs is fortunate: she has been living with triple negative breast cancer for five years. She’s very glad her disease has been quiet–she’s happy to be stable. But why aren’t we learning from people like her?
    “Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? asks Ginny. “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.”

  6. Ethel says:

    Sometimes my MBC to bones and lungs test results are stable, sometimes it worsens. Depends on what chemo or hormone I am on. I have had 6 or 7 treatments over the past 5 years. All of which have failed eventually. First diagnosed in 2002 for BC No pain, and only side effects due to Paxi taxel is hair loss. And that chemo no longer works so I am moving on to Doxil. I keep asking and researching for clinical trials but either there are none or they are thousands of miles away. I know my age of 82 is against me but a clinical trial might benefit others. So where are they???

  7. Lynda says:

    Thank you! I was diagnosed with HER2 positive MBC in 2008. I had chemotheraphy – Taxotere (docetaxal for 6 months) together with Herceptin. I have been on Herceptin ever since. I am now up to my 106th treatment. All going well for the last 6 years! Where is my clinical trial?

  8. Brenda says:

    How about me? After 4 treatments in a span of 6 weeks my tumors were all gone. After 4 months of same treatment my oncologist said my cancer was in remission! Then, I had 3 months off from chemo and now the beasts are back! What makes my bc hate chemo so much? And why does my body respond so well to it? Am I lucky or doomed?

  9. Donna Chapin says:

    Sign me up. Let’s tAlk about this.
    Wonder drug perjeta!

  10. MBCNbuzz says:

    Thank you all for your wonderful comments. I appreciate hearing your experiences. We’ll keep pushing this message of research on what triggers mets and what determines being stable or NED.

    Sheila: a few years ago Johns Hopkins had a program for “rapid autopsy”–seeking mbc patients willing to donate their bodies to metastatic research. I’ll see if I can find any followup on that.

    Take care,
    Ginny

  11. MBCNbuzz says:

    Sheila or anyone interested in donating their body to research: You can email Lillie S
    hockney at Johns Hopkins and she can connect you to some interested researchers. Email: shockli@jhmi.edu

  12. Sheila Ghosh says:

    Reblogged this on Sheila's blog and commented:
    What a great blog post! Yes, there are quite a few of us living well beyond the 2-3 years life expectancy for metastatic breast cancer patients. For me, I just passed the two-year mark today (it was two years ago that I was diagnosed with breast cancer, the mets were discovered two weeks later).

  13. Kris West says:

    I was dx a year and half ago at age 46 with stage IV, ER/PR +, HER -, Invasive lobular bc with bone mets. I have been on tamoxafin since then and am NED. Surgery: Hysterectomy & 5 nodes, double mastectomy. I am being treated at MD Anderson and was able to participate in a genetic study (only because I asked) through Foundation One. They found a rare genetic gene mutation called CDH1 that supposedly can cause metastasis (from what I’ve able to find on it) There is currently no targeted therapy, but if there was it could control my cancer and maybe help others too! I am with you ladies! They need to study the people living with metastatic cancer, record it and learn from it!

  14. Patricia Ridgley says:

    Yes! yes! – my thoughts precisely –here I am “still stable after all these years” (10 even!). How I would love to be a part of research that would help those coming along behind us!

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