Wednesday, September 26, 2012

Reflections on the past and hope for the future

Today marks the one year point since I finished the hardest thing I've ever done in my life - dose dense chemo.  I was less fearful of the surgery that removed both breasts and fourteen lymph nodes.  I have to admit I surprised myself and maybe even my family - I thought chemo would "take me down" and I'd be so sick from it that life would be just miserable.  But it wasn't nearly as bad as I had expected it to be.  Mind you, it was no picnic.  But it was "doable" - that word I hated to hear people use when talking about breast cancer treatment.  Yeah, it was doable.  Getting on with life after losing limbs in a war is "doable", too.  The human spirit is amazingly resilient and somehow, people tend to get on with their lives, one day at a time, regardless of how daunting it might first appear.  And the love of my husband, children, grandchildren and my fabulous dear friends made it all tolerable.

Of course, at this time last year I had no idea that I'd be living the rest of my life with the thought of endless treatment for this beast called breast cancer.  That call this May when my oncologist shared the bad news that my cancer was back and had metasticized to my lungs - well, that was not what was "supposed" to happen.  I had fought a good fight, done everything to beat back the cancer, and I was planning to get on with my life, like most of my ancestors who were "short stocky French women" who lived forever.  My great-grandmother as well as my grandmother lived into their 90's.  One of my aunts lived to be 102.  Longevity is in the gene pool.  My excellent Dana Farber radiation oncologist told me that with all the treatment I had endured, my chances for another recurrence had been reduced to 10%.   So, what do they really know?

It turns out, they don't know as much as we'd all like to think about who will or will not beat back breast cancer.  All the statistics, and there are lots of them, don't really mean much.  When the chips are down, because they don't know what causes breast cancer and they don't know what cures breast cancer, it's all a really big crapshoot.  Let's face it - I had an 87.5%  chance of not getting it in the first place, a 70% chance that I would not get distant mets if I didn't undergo chemo, and a 90% chance that I would not have a recurrence after completing treatment.  And oh, triple negative breast cancer is supposed to be more prevalent in women under 50 and minorities.   Not feeling all that lucky at this point! 

The recent announcement from MD Anderson - their "moon shot" program - now that gives me hope for the future.  They announced their intention to cure several types of cancer before the end of the decade.  Triple negative breast cancer is one of those targeted cancers.  That is great news!  Here's a link for those of you who may not have heard or read about it:

I think I'm going to contact them and offer tissue samples from my cancer for their research studies.  I want to contribute, I want to be a part of this program that may, ultimately, be my lifesaver.  I want to be able to look back, 20 years from now, and tell my story about how I beat metastatic triple negative breast cancer.

And now, for a little update on me and the clinical trial with ARQ 197. 

The drug is treating me well - no significant side effects other than I just can't eat really spicy food and I may have to admit to a little fatigue.  Not too bad.  If this drug is effective, I could take it the same way I take my diabetic meds - just another group of pills in my ever-expanding pillbox that keeps me going, almost normally.  No nausea, no hairloss, no pain, nothing I can't tolerate long term.

Last Friday, at my request, the oncologist included tumor marker testing along with my regularly-scheduled labs (complete metabolic panel and complete blood counts).  The CA27.29 test came back at 101 (normal is below 38).  This is the test we've been using since I first started this cancer journey, so we know it's a reliable indicator of what my sneaky cancer is up to.  In mid-August I was at 89, so I'm not overly concerned about 101.  I wasn't on any treatment for a couple of weeks, I've been on ARQ 197 for just three weeks, and it's probably too soon to expect any significant changes. 

The surprise test was the CEA, which tests for proteins given off by carcinoembryonic antigens.  "Carcinoembryonic" reflects the fact that CEA is made by some cancers ("carcino-") and by the developing fetus ("-embryonic").  We know there is no embryo developing in my  It's used to measure treatment progress for a few cancers - colon, breast, stomach, lung and ovarian.  It can be elevated if you have liver or other intestinal problems.  The normal range for CEA is below 2.5 (unless you are a smoker, which I am not).  My result came back at 0.8.  I think this is really good news, but I need some further clarification.  I have no frame of reference for this test in my own specific situation.  I've discussed this with some of my "sisters" on who have metastatic disease.  Some of them have CEA numbers ranging from 20 to 2000+.  So, 0.8 gives me hope.

Is it possible that ARQ 197 is working for me?  It's not unusual for the CA27.29 to rise while in the midst of chemo treatment, then fall a few weeks after treatment is finished.  Is it possible that this clinical trial drug is turning off c-met (a receptor tyrosine kinase implicated in tumor cell migration, invasiveness, and proliferation, and it is abnormal in many human cancers)?  Is it possible that my CEA score is accurately reflecting what's happening at the most basic level of my cancer cells? 

I will have a CAT scan on 10/5.  It will reveal the truth - has the cancer regressed, stabilized or progressed?  We'll have some answers very soon!  And hoping for good news!


  1. Michelle - As always, you remain in my prayers for a positive outcome this time around. Your resilience is amazing. I've been following the "moon shot" program in the news. It would be absolutely wonderful if this can generate a cure.


  2. Michelle, you are so knowledgeable about stage 4 breast cancer. I can't believe all you've digested in this short time. Your information to others is invaluable, and I think donating a tissue sample would be so great! I'm also really glad you've not had major problems with taking this drug.

    As you said, there are so many variables, and also testing going on right now. You can't know what the odds will be, and rightfully just do what you're doing to keep your sanity throughout this whole process. I love your enthusiasm and how you enjoy your life, friends, and family. This should be the norm for "everyone". That's why I'm taking my trip back East to visit my brothers. I'm "so" excited...really excited, Michelle to meet you this trip. Soon...Check out my bison photo and why I didn't open the van door all the way.

  3. HI Michelle. Thanks for your update. It amazes me the knowledge you have about your cancer and the research you have spent on it. Seems you should be a doc of oncology LOL
    I keep you in my prayers alot along with someone else you know for complete healing. In God's time he will heal if we are just patient I think.
    Bless your heart, this has been a journey and will continue to be a fight because you never quit on cancer.
    I am always here for you but it's long distance to KC but you can email or FB me anytime. I miss you and Rick and all my days helping the both of you. Rick was such a great guy to me when he was there and our talks meant alot. I know your family is your support and those grandchildren are precious and you get to spend alot of fun times with them and that's important.
    Keep it up! Stay positive, exercise, and have fun. XO Diana