Measurable disease

On our drive from Texas to Georgia, we had an unexpected stop that took 4 minutes. Though inconvenient, it was necessary. Once we started driving, we barely made it a mile or two when we saw break lights and swerving in front of us. We were on a two lane highway at night and slowed to an almost stop. We passed an accident that had just occurred. No police or ambulance were even on the scene. There were 4 cars involved (everyone appeared ok) and one of the cars was sideways in our lane.  The accident, the time of day and the angle of the car was terrifying. Joe & I looked at each other in disbelief. Had we not stopped unexpectedly, that would have likely been us. A blessing in disguise that I cannot get out of my head.

We met with the Phase 1 Clinical Trial doctor and nurse practitioner today. After a history, record sharing and blood work, we discussed trials. There are 4 trials that are options, two of which are immunotherapy and two targeted treatment options. One trial in particular is specific to triple negative breast cancer. I qualify based on my disease and history…and yet I cannot currently participate (therefore don’t currently qualify) in any trials because I do not have enough measurable disease. The skin lesions that I have are not large enough (1 cm) and my bones cannot be used because the lesion size would not change because it would stay the same size despite shrinking cancer.

He left an email with my Emory oncologist but his recommendation is to either continue Xeloda or begin Afinitor until I have progression that is significant enough for a trial. He also suggested a chest xray prior to any treatment changes for a baseline to ensure any new treatment is working. I asked about relocating for trials and he stated that the 4 that I would have qualified for would not require relocation. The first month would be regularly required visits but then treatment would be every other week or monthly, recommending a drive or flight versus a move.

This is challenging to hear because I have cancer yet not enough. This disease is present and slowly taking up residence and yet it’s not aggressive enough (despite its aggressiveness). But…

I don’t feel discouraged. Actually, I feel a bit the opposite. I feel slightly more encouraged mixed with a bit of happiness. Now is not the time. I have always been a believer that everything happens for a reason and I cannot help but believe that this is quite literally one of those times. These trial options are promising but now is not the time for me. And I’m ok with that.

I am not yet healed from radiation and at some point I will heal and have these dang tissue expanders removed. This is likely a surgrey that cannot happen  while on a trial. These are things that need to happen before beginning a trial.

In terms of treatment, I am tempted to continue Xeloda until I have internal progression. Yes, I have skin progression but it’s liveable. It doesn’t hurt or itch and despite them popping up here and there, they are apparently quite small. I am hesitant to begin a treatment like Afinitor when Xeloda seems to be doing something inside of me.

So, I will continue to have faith that the right treatment will come at the right time for me. And all will fall into place.

Enjoy this week everyone. It is the beginning of a season filled with family, fun, laughter and memories. Embrace every moment!

8 thoughts on “Measurable disease

  1. My sweet sweet girl, I think of the many decisions I make each day, the tiny stresses I encounter and then I think of you-beautiful you…you were my light through the dark days of chemo and you’re my inspiration in this time of uncertainty.
    Love always.x

    Liked by 1 person

  2. You have the patience and outlook of a saint, and my admiration for you grows with every post. You’re a blessing. Have a wonderfully satisfying Thanksgiving surrounded by those you love.

    Liked by 1 person

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