What’s going on?

Usually, no news is good news around these parts. It means I’m living my life and things are chugging along. I wish I could say that has been the case. But as ever, chronic disease is chronic (it’s in the name!) and so we’ve spent the past two months getting information, and then more information, and now we’re back to exploring treatment options.

This time with a side of clinical trials.

But first, let’s catch up, shall we?

In early July, I found out my blood marker (CA-125) was continuing to rise. I was asymptomatic, so we weren’t overly concerned, but it definitely warranted further investigation. I had a trip on the books to Boston and New York, so we scheduled a PET scan (bypassing a CT altogether — I had a clear one in January) a few weeks later.

As luck would have it, my annual breast MRI was the following week, so I got an early indication of results from the breast specialist when he called me to note that the MRI was similar to that of the PET. (He NEVER calls me, so I knew right away the news was not going to be great.) Professional courtesy being what it is, I didn’t get any definitive information.

We got those results two weeks ago: activity in the axillary lymph nodes of my armpits (both sides) and multiple lesions (only on the surface level) of my liver.

So yeah, not great.

There was ZERO activity in my abdomen or pelvis, and while this is great, it is also a bit of an anomaly since ovarian cancer tends to recur in the same place as its origin. I’ve had activity on a PET in both these areas before, but, as ever, we needed more information. (I’d also like to note the PET indicated that the gall bladder looked fine, which is problematic because I don’t have a gall bladder. Does that mean I get to throw out the rest of the results? Sadly, no.)

Biopsy time. Because, plot twist! We had to make sure we were dealing with the same kind of cancer. With my BRCA1 mutation, the possibility of breast cancer was not off the table. Ain’t that some shit?

We also touched briefly on treatment options (there are a ton available within Kaiser’s system, so we certainly have not exhausted our options in the slightest), but Dr. T mentioned we may want to look into clinical trials.

Sidebar: I used to think clinical trials meant “last resort” and while that may be true later down the road, we are not at that point. As it turns out, healthy individuals can see real benefit from participating in a trial, getting access to drugs that haven’t come to market.

I have less than zero experience in clinical trials. I can read journal articles all day long, but this is the stuff BEFORE the journal article ever exists. I don’t know WTF I’m doing. But I know people who are SUPER smart and the past two weeks has been spent doing a lot of talking (and emailing and texting) with them.

As serendipity would have it, a former colleague connected me to the Clearity Foundation in San Diego whose literal tagline is “TREATMENT OPTIONS FOR OVARIAN CANCER PATIENTS.” They have a robust search tool that helped me identify top options for which I am eligible.

Sidebar 2: I am only considering Phase 2 trials, as those are more focused on efficacy, in addition to knowing the dosing schedule and side effects learned in Phase 1. Thanks, Dr. Tierney for explaining the difference to me!

Nothing, of course, could happen until we got biopsy results.

In the meantime, we found about 6 promising trials, sent them around to various smart friends (all doctors, to be clear), compiled the data, and met with Dr. T yesterday to talk through everything.

Thankfully (?), the cancer is the same.

Knowing what we’re dealing with, Dr. T gave the rundown of the various approaches we could take within the Kaiser system, then inquired it we had any good leads on the clinical trial front.

Why yes, we did.

More talk ensued, a follow up visit scheduled in a few weeks to talk more, and I was off to the races.

I know I’m yada yada-ing a lot of details, but there’s just. so. much. This is a whole new ball game.

AGAIN. *shrugs*

The long and short of it is this: We’re strongly leaning toward doing a Phase 2 trial first. The other drugs aren’t going anywhere.

There’s still plenty of information gathering happening: we’re waiting to get Dr. T’s take on the trials, as well as speak with one more oncologist in the Kaiser system (in Dr. T’s words “She disagrees with me! I like her!”), and I’ve communicated with the trials we’re considering.

There are many more weeks before anything happens, but obviously a lot of emotional labor is being done as we figure out what’s going to be best for me. Just know I’m in a good head space (truly) and am focused on taking it all in (drinking from the proverbial fire hose) and taking it one step at a time.

How do you eat an elephant? One bite at a time.

* * * * *

A Life With Cancer Anecdote

There’s always a small piece of me that goes into test results appointments with hope that “maybe this time it won’t be anything.” ALWAYS (hello, optimist over here, in case you hadn’t noticed). I keep that hope alive, because the moment it dies, I know something else in me will too.

That being said, my pragmatism has increased exponentially over the years. During the in between time of biopsy and results, in one of many conversations with a hemotology oncologist (thanks Hilary!), we talked about possible outcomes of the biopsy. Before we hung up, he told me he hoped for the best outcome.

To which I said, “Thanks, I hope it’s ovarian cancer too.”

And he replied, “No, I mean I hope it comes back benign.”

I couldn’t help but laugh. It hadn’t occurred to me to consider that an option until just then. It was a good reminder.

Of course, I always hope it’s not cancer again. That’s what hope is, right? It reminds me “Maybe…” and “It’s all going to be okay.”

Because it is all going to be okay. No matter what happens. Hope is what I can control.

 

30 thoughts on “What’s going on?

  1. Wishing you all the best with this new fight! Hopefully the clinical trials can bring something new to the table. And I’m right there with you on the optimism and hope, it’s really the best thing because the alternative just won’t make things any better. Stay strong!

    Liked by 1 person

  2. Wow, so much to ponder for sure! Someone in our kidney cancer group is very savvy on clinical trials; if you need general info and advice I’m sure she’d be happy to help you. But it sounds like you’ve become a subject matter expert, just like everything else you do.

    Has the tumor been genetically sequenced? I went through a company called Ashion; I felt their approach was better than others. The report included which therapies might be more effective for each mutation and they also listed clinical trials.

    Sending healing vibes and love your way!!

    Liked by 1 person

      1. Ashion is in Phoenix and the research side of a company called Tgen. PM me if you need contact names or want to know why I think they may have a better approach than Foundation and other companies.

        All the best to you, as always!

        Liked by 2 people

  3. Just once I want an oncologist to say, “Uh oh, that lump isn’t cancer… it’s a bot fly!”

    You know where to find me when you want more help deciphering science
    🧪🧫 🧬

    Love you buttface!

    Like

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