Sorry for keeping you in suspense about my scan results! I had a second, different type of scan today to clarify some of the findings from the one I had last week. The short version: I still have cancer, which of course I was secretly hoping against all reason not to hear. The imaging still reveals at least three tumors, roughly the size of cranberries, scattered through the peritoneum (abdominal lining). But they haven’t grown significantly, and my liver, lungs, and other organs remain unaffected. In other words, my cancer is stable.

Did you hear that? STABLE. Which, in the world of stage IV cancer, is often as good as it gets. For now, at least. I like the term “currently incurable” coined by fellow cancer blogger Dr. Tom Marsilje. It’s both realistic and optimistic, a balance that strikes me as an important factor in patient survival. I was considered curable once; I may become so again as new treatments are developed. Stable is the first step. It’s a branch you manage to grab onto and pause mid-tumble down a mountainside. Even if you’re nowhere near the path you started on and still in a very precarious position, it’s rather thrilling to find yourself right-side up and not dead yet.

My beloved oncologist was on vacation this week, so I met with his colleague instead, and he recommended I consider enrolling in an immunotherapy clinical trial that’s just opened at that institution.  (It’s funny, I thought I was already trying immunotherapy, but he explained that the drugs I’m on in addition to chemo are actually called “targeted therapies,” and there’s a difference. Told you I wasn’t a scientist.) This trial has been in progress for a while in other places, with promising early results, and I know my oncologist has had his eye on it, so I was excited to find out it’s finally available locally.

HOWEVER. Switching to a trial would mean stopping my current regimen, which might be working (or at least not failing). We’ve only just convinced my insurer to cover the BRAF-inhibitor drug, and might not be able to do again if we started the process from scratch in the next calendar year.

Deciding whether to enroll in a clinical trial is a big decision for several reasons. There’s the obvious risks involved in being a guinea pig, of course. A still-in-testing drug might destroy your quality of life and then turn out to be an utter failure, or even kill you. Trials also involve a lot of additional tests and appointments and paperwork and protocol, which is no small thing when your normal life already feels, well, upstaged.

But such risks take on a rosier hue when you’re running out of options. The thing that gives me most pause is knowing this is kind of a one-shot lottery. Once I’ve been in a trial, I become less likely to fit the criteria for future trials, many of which exclude patients with prior exposure to the same class of drugs. So if I jump at this immunotherapy trial now, I may be excluding myself from a better one a few months down the road. Then again, if I don’t jump, I may regret it bitterly if it turns out this was the silver bullet we were all looking for and I’m left in the limbo between when a trial closes and when a drug actually becomes approved and available.

Knowing my oncologist would answer his email even from the moon, I wrote to see if he would recommend I enroll in the trial ASAP, since slots are filling fast. But he replied that he thinks we should give the current treatment more time.

Shall I keep holding onto this branch for a while, or scramble to reach another one?

Prayers and collective wisdom appreciated.

P.S. Extremely good article here about clinical trials from a patient perspective:

7 thoughts on “Stability

  1. Yay!!! That is wonderful news. You should, maybe, revel in it a little before you worry about the next step? I know you, though, it’s already too late. I’ll revel for you 😊

    Liked by 1 person

  2. You’re in my thoughts and prayers. I know you’ll do what’s best for you. If I can help in any way please let me know. I wish we lived closer to be able to help.

    Liked by 1 person

  3. Have to say hanging in there seems rational. (Grab the crotch…of the tree, I mean.) Not that any of this can be called that. But I do like the term “stable” if “cured” isn’t an option. Thinking of you daily! And I’m available for dog walking or child entertaining…..or whatever you need. Donut eating, even.

    Liked by 1 person

  4. This advice your onco gives you to stay the course seems wise. I know that when you have cancer, you become a specialist in your own treatment (I did that!), but ultimately your onco is your guide, leaving you to enjoy your life and your family. Wishing you a warm and lovely day today. Love and hugs!

    Liked by 1 person

  5. Love you Amanda…and Chuck and Eleanor. Thinking about the wonderful time when you took me in for a few days and we went to the zoo. Stay strong. -Daniel

    Liked by 1 person

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