Xeloda, Day One

So I started chemo again today.

The short version is that I'm participating in a clinical trial for people with my particular flavor of breast cancer that is expected to significantly reduce my risk of recurrence. There are two groups in the study: those taking an oral chemo called capecitabine, and those taking an IV chemo called carboplatin. I was randomly assigned to the capecitabine group, and I'll be taking the medication for 18 weeks, with two weeks on and one week off.

For those who want more details, here you go. My oncologist first told me about the trial when I saw him just before my surgery in September. After my pathology report showed that I'd had a partial, but not complete response to the chemo, we decided it would be a good fit for me.

The study is comparing the use of capecitabine with the use of platinum salt drugs (either carboplatin or cisplatin determined by the prescribing oncologist) to reduce the risk of recurrence in people with triple negative breast cancer who received neoadjuvant (before surgery) chemotherapy but still had a tumor of greater than 1cm at the time of surgery. A Japanese and Korean study (known as the CREATE-X study) released early last year found that the use of capecitabine was beneficial in reducing recurrence in women with TNBC by about 15%. Here's the link to the study, if you're interested.

It wasn't too hard a decision to make. Chemo sucks, of course, but that's a huge reduction in risk and I am certainly willing to have another few months feeling crappy in exchange for no Titmonster recurrence. That would be way crappier.


My hospital, GBMC, wasn't one of the trial sites, but Johns Hopkins is, so I contacted the coordinator there and started the process in November. I saw the medical oncologist at Hopkins with whom I'd met for my second opinion, who also thought it would be beneficial for me to participate, and later I met with the coordinator. She determined I qualified, and I signed all the consents and had blood work done. Then, it was a waiting game until I finished radiation and they could randomize me.

In the meantime, I realized that I really didn't want to change providers and hospitals. I liked the people I interacted with at Hopkins, and I have confidence I'd get good care there, but.... it's huge. I had to talk to five different people just to get my parking validated so I could leave. They gave me an orange card that I'd have to swipe whenever I arrived to do anything. Their gowns don't even provide coverage. It just didn't have the same feel...it isn't GBMC.

My radiation oncologist had already encouraged me to ask about GBMC becoming a trial site; he thought they would be amenable to it. So I hemmed and hawed for a few days, and I finally emailed my medical oncologist at GBMC. The next day, someone from the cancer center called to say it was absolutely possible and that they were happy to become a trial site. Yay! At my next appointment with my MO, just before Christmas, I signed the new consents and they were able to send off a tissue sample, another prerequisite for the study.

The tissue typing took about 4 weeks, and I finally got a call last week that they had the results and I could move forward. I had to get blood work done again, as too much time had passed from the first time I had blood work. The clinical trial coordinator asked me to hold off on getting the bloodwork done until the pharmacy had completed its end of the paperwork (I don't know the details) so that I would only have to go once--I'd have to have labs drawn again no more than three days of starting chemo, but if we timed it right, the pre-randomization lab would also count for the pre-chemo labs.  We planned for me to have my blood drawn on Tuesday and today I would attend an oncology teach session and doctor appointment, as well as my infusion, if I ended up in the platinum group. I would know by Wednesday which group I was in, which would give me time to square things up at work and read everything I could find about whichever drug I was assigned to. I intentionally did not read up too much about the medications ahead of time, because I did not want to get my hopes up to be assigned to one group over another and face potential disappointment if I was randomized to the other.

There were some miscommunications and small errors and annoyances that added up to me not being randomized until early this morning, which was frustrating and inconvenient, but not a huge deal in the long run. I'm still glad to be doing it at GBMC.

I'll take the medication twice a day for 14 days, then get a week off to recover; those three weeks comprise a cycle. I'll have six cycles total. So far I feel fine; let's hope that keeps up...