Merry Christmas! Happy Hanukkah!
And big news…I’m officially finished with chemo! And why? Because an awesome PET scan showed that I’m NED! Translation? No evidence of disease. No evidence of cancer. Or, in super medical terms, no hypermetabolic lesions
to suggest active metastatic disease.
Now, I do want to provide a disclaimer: no evidence of disease does not mean that I’m cancer free or that I’m cured. Metastatic breast cancer can be managed but it is not curable. Going back to the medical jargon from the PET scan, there is no “active metastatic disease”, emphasis on the word active. Cancer mets have a cunning ability to hide out and stay dormant. Until they are active and large enough, they won’t show up on scans. And they could show up next week…or next month…or next year…or years from now. Who knows…
That said, NED is probably the holy grail of metastatic breast cancer, the status that every patient hopes to get to. In my case, it took 19 rounds of chemo and an investigational drug called Indoximod (and granted, I might have been taking a sugar pill and not the real thing, in which case I only have chemo to thank) to get there.
Some have asked why I wouldn’t continue with the clinical trial if it has worked so well. Indoximod (the trial drug) is currently only given in conjunction with Taxotere, a chemo. Getting 19 rounds of chemo has definitely tested me on every level because while chemo attacks cancer, it does not discriminate and also attacks healthy cells. And it accumulates in the body so with every additional session, my side effects multiplied. At a certain point, chemo can do more bad than good.
In my case, either chemo or Indoximod (hard to know which) caused pretty intense swelling of my legs and arms, and muscle rigidity. My muscles are insanely stiff all the time–like a body builder’s would be if they were flexing…except I don’t even work out…or flex! Between swelling and muscle issues, my flexibility and range of motion are very limited. As a result, I can have a hard time walking, going up stairs, getting in and out of cars, getting dressed, and the list goes on. Now that I’ve quit the trial and won’t be receiving any more chemo, these side effects should improve and eventually go away.
So what’s next? For now, I will continue with my monthly Lupron shots which suppress estrogen production (my cancer is estrogen positive) and I began taking a pill called Femara which targets estrogen produced by adrenal glands. Compared to chemo, this is a cake walk. And this treatment will allow my body to recover so that we can potentially consider other more involved treatments in the future.
That’s all for now. I hope everyone enjoys Holidays with their friends and families! I will leave you with my new favorite version of “Hallelujah” from Pentatonix…