Tuesday, June 19, 2012

A medical update

Now that our Paris trip (a definite no-cancer zone) is a fond memory, it's time to come back to the reality of dealing with metastatic breast cancer (MBC). 

Pills, pills and more pills.  So now I have two "chronic" illnesses - Type 2 Diabetes and MBC.  Taking medication is nothing new to me - I've been diabetic for 11 years and I'm used to swallowing medications.  And during chemo last summer, I felt like a chemical waste dump as I took so many meds to counteract the side effects of the strong chemo that was supposed to tame this beast.  The meds made chemo tolerable for me, and I managed to get off all of them, other than the diabetic meds, for about six months.  And then came the blood test that foretold the likelihood of more cancer taking up residence somewhere in my body.  And the PET/CT scan that confirmed our worst fears. 

Last Tuesday my Xeloda arrived from the specialty pharmacy associated with Express Scripts.  Surprisingly, this $2600 a cycle medication has a co-pay of just $25.  That's a relief, I was a bit worried that we'd be on the hook for several hundred dollars a pop.  I took my first dose last Tuesday evening, 1500 mg (that's 3 of the brownish-looking pills) thirty minutes after eating.  It's not a med you want to take on an empty stomach, as it can cause nausea.  So morning and evening, after dinner, I have X for dessert.  I've now completed a full week of the two week cycle, after which I'll have one week off before "rinse and repeat." 

Xeloda is the brand name for capecitabine used extensively in the treatment of both colon cancer and metastatic breast cancer.  My Dana Farber oncologist in Boston told me that the side effects were mild, maybe a little peeling of the hands or feet.  But it's another one of those situations when you read the prescribing information and all the possible, or likely, side effects, it's not as benign as she made it sound.  But then, reading the prescribing information for aspirin can scare you, too. 

The good news for me is that, so far, there is no news.  I've not experienced any side effects.  I seem to have avoided the more immediate possibilities like nausea or severe gastrointestinal distress (my nice way of saying explosive diarrhea).  The "peeling" is actually hand/foot syndrome and it can arrive, on average, 11 to 79 days after treatment begins.  So I haven't been on X long enough to experience that particular problem.  There is the possibility of other side effects that could crop up - problems with my bilirubin counts, the usual low white and red blood counts, and a few other unpleasantries that you can read about if you're very curious:


I will have bloodwork weekly for a while to be sure that none of these nasty things are unknowingly occurring.  Dosage can be adjusted or a treatment cycle skipped if severe side effects do occur. 

How will we know if X is doing its job?  I'll have PET/CT scans again mid-August.  Dr Walsh, my local Dana Farber oncologist, warned me that these first scans might not show if X is effective, because there was a month from the time my MBC was found until I started taking X.  But it sure would be nice to see some regression, or as my MBC sisters call it "Reggie-Boy shows up."  The long-term goal, of course, is to have a scan that shows no evidence of disease.  That would mean a nice long dance with NED.  NED and Reggie are my friends.  The "stable" boys are OK, too. 

One more thing...on Wednesday after we returned from Paris, a biopsy was performed on one of the nodes that lit up the PET scan.  The point was to reconfirm the hormone status (ER, PR, and Her2/neu).  The results came back ER negative, PR 3% (essentially negative) and Her2/neu negative.  In discussing the Her2/neu results, we know that my pathology from last year's surgery showed that I was Her2/neu +.  One + is considered negative.  Some people are ++++.  They get a targeted therapy called Herceptin.  There are some clinical trials underway to determine if administering Herceptin to those of us with just one + is an effective treatment.  So because the latest biopsy came back as negative without explanation, my doctor has ordered a FISH test to ascertain my Her2/neu status.


If the test should come back with one +, I may qualify for one of the clinical trials and would receive Herceptin or maybe even that new "smart bomb" that some of you heard about.  I need all the help I can get, and I'll gladly participate in any trial that shows promise in controlling MBC.

For those of you who might want to learn more about MBC, there is an excellent website:


One more site where you can join in discussion with others who are supporting family and friends with breast cancer:


There are close to 115,000 people who have registered on breastcancer.org - it's a wonderful site and has been an incredible source of support and information to me and all the others who are fighting this beast, and there's a place for family and friends to support one another, vent, and learn.


  1. Wow. This is such a lot of information, Michelle. I've been slowly reading and studying, mostly so I can understand what you're posting! :)

    I feel at such a loss for words, other than to cheer you on. You're so brave and appear to those of us on the outside observing to be handling this journey with such dignity and aplomb.

    Thank the Lord in Heaven for $25 copays.

    I'm still wandering through the Paris posts. *le sigh*...so beautiful.

  2. I went through Christine's pics and commentary - just wonderful.

    I am attempting to go through the various links so I can better understand the beast called breast cancer. I pray for long, long, periods of remission. Thanks again for sharing your journey - wish it was a journey you never had to take.


  3. Michelle, I finally had some time to really read up on your post here and the links. Thanks for taking the time for us to understand. And like Elaine said, I wish this wasn't a journey you had to take.


  4. Ditto, Linda's reply. You gave us a much better understanding of what's going on within your body. It does suck that you have to go through this. Your attitude radiates positivity, the best thing for fighting.

    Hopefully, you will qualify for the Herceptin trial. I've heard nothing but good things regarding this particular med.