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  • Writer's pictureStephanie

NED and Xeloda

Back at it, y'all. Ricky took this picture by accident at my appointment yesterday but I feel like it is a pretty accurate depiction of what our lives have been like for the past 9 months or so. Lots of appointments, lots of waiting, lots of nervous energy.

Do you want the good news or the bad news first? Let's start with the good. I went into my appointment with a list of questions to ask Dr. T, the biggest one being: am I in remission? I have seen so many of my cancer friends post result letters saying they had a pathological complete response (pCR) or they were in remission and I was sitting around, slowly freaking out over why I hadn't heard those words! Dr. T explained to me that she doesn't use the word 'remission' for cases like mine but rather No Evidence of Disease (NED). And, drum roll please, she said I was NED! If you'd like more information on what it means to 'be NED' please read this article. It explains things simply and expresses what a NED survivor needs in the way of support.

Oh Ned, how I love you!

Yay! NED! I'm done, right? Not quite ... Going back to my surgery, you may recall there was still some cancer in the tissue they removed. Because all of the cancer was not eradicated by the neoadjuvant chemotherapy, oral chemotherapy is being added to reduce my risk of recurrence.

So what is the plan? At this time, the plan is to do six months of Xeloda (oral chemo). This drug is taken at home, once in the morning and once at night, for seven days. Then I get one week off, before starting the cycle again the following week.

I've heard a lot of not so great things about side effects with Xeloda, so I am definitely nervous. Ricky and I completed chemo class yesterday and I was sent home with paperwork on the side effects, just as I was with my IV chemo drugs. The major side effect is called hand-foot syndrome. This can cause rashes, swelling, pain and/or peeling of the skin on my hands and feet. Dr. T advised me that I need to be very careful not to irritate my hands (if I do any cleaning, I need to wear cotton lined gloves) and that I cannot walk barefoot, because my feet will be numb and I could step on something or get burned and not feel it.

Other common side effects include low white blood cell count (looks like I will be avoiding crowds and not doing much socializing again), low red blood cell count (anemia - exhaustion) and stomach issues (nausea, vomiting, abdominal pain, diarrhea and/or constipation).

In addition, I need to avoid sun exposure. So I guess my hopes for a celebration vacation will have to wait until this winter.

I am trying to stay upbeat! My mindset has been, "I will do whatever it takes to beat this" and I need to stay in that mindset. It's six more months -- I can do this!

Updates & Prayer Requests:

  • The plan is to start my first cycle of Xeloda this Monday, July 1st. I will start with a slightly lower dose, to make sure my body can handle it. Please pray all goes well.

  • The fourth receptor: I am something called androgen receptor positive (AR+). We were hopeful that this would provide a new drug option but it is still in a trial phase. The drug that would be used has not been FDA approved for treatment in TNBC AR+ patients. Dr. T is keeping her ear to the ground and if anything changes for my regimen, I will let you know.

  • Thank you so much to those who have contributed to my Recovery Registry! In addition to helping me physically and emotionally, 'mend after' will make a donation to Living Beyond Breast Cancer in my name and they will donate 10% of their proceeds to people who cannot afford cancer recovery care. To learn more or to contribute, please click here.

Thanks for caring about me and encouraging me on this journey!

All my love,


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