Monthly Archives: March 2021

Proud of this

It has been almost two years since I began working for Medidata as a paid consultant. It is a task that I find stimulating, gratifying and rewarding. Work that I am proud of.

Alicia Staley, a cancer survivor herself, created the Patient Design Team in 2019 and brought me on board.

Unlike so many panels I have been asked to sit on, or visits to pharmaceutical companies, this is not a one off. We are a cohesive team that has slowly grown and which will eventually have fifteen patient advocates. Alicia and T. J. Sharpe–who was originally a member of the team but is now a Medidata employee–have created a fun but also incredibly meaningful experience for our group. We feel respected–seen and heard–but even better, truly regarded as experts on the patient experience. Medidata, ‘the global leader in creating end-to-end solutions to support the entire clinical development process‘ is providing us with the opportunity to help design their product. It is an innovative approach that was recently recognized by industry, as Alicia and her initiative took a first prize in the 2021 Scope Participant Engagement awards.

You can see the (short!) winning video here with footage from our last in person meeting. Please take a gander. And Alicia, please take a bow. You rock.

Like a whisper

“I came to live out loud.” Emile Zola.

And so I did. But over the past week or so I have been living quietly. Grieving, as yet another friend passed. A person too bright, too young, too loved. And yet, too soon gone.

Healing. I have a lot of healing to do. Physically and emotionally. A respite, if you will, before the next trial.

My latest scans were essentially stable. Not according to the radiologist, who saw progression. My oncologists always review the scans themselves, and Jess felt they were unchanged. I’ll go with her assessment.

As far as next course of action, I will likely enroll in the Lorlatinib/SHP2 inhibitor trial.

My big concern is that like binmetinib, a MEK inhibitor, SHP2 inhibition has the potential for retinal side effects. So that is an if for me.

However, by the time I would start, there should be several others enrolled and therefore additional data per potential adverse events.

In two weeks, I will check in with my team. In a month, scan again. And then, maybe, rock and roll.

In the meantime, this space traveler is enjoying the hell out of not feeling like shit.

Ok but not

I will be ok.

But not today. Today I am taking a break from everything’s fine. Because I truly am not. Not ok with split fingertips, pustular acne, bowels that are hopelessly confused by the addition of iron.

Nausea, which has me running for a bowl at least once a week. Mouth sores. Blisters on my eyeballs, which admittedly I didn’t even know were there until my retinal exam on Thursday and yet are serious enough that I’m out of another treatment option.

That. Another dead end.

But really, did I want to continue with all these troublesome side effects? In my heart of hearts, I did not. But I also preferred the idea of me being the one to initiate the break up.

However, I am looking forward to smooth skin, hands that don’t hurt, my tongue and gums not riddled with sores. And eyes that keep on seeing–that one is very important.

I received my second COVID vaccine several hours ago–something I am so very grateful for. As I developed a low grade fever after the first one I imagine I’ll be laying low tomorrow.

And then on Monday, a trip to Boston and some interesting discussion as to what happens next.

The wild blue yonder

So it’s official. Another one (therapy) bites the dust.

I spoke to Jessica Lin this morning and I shall not be going back on binimetinib. Hopefully the ocular toxicity I have experienced is reversible. I’m thinking it is. However, were the retinopathy to progress–as it likely would should I continue on any dose of binimetinib–my vision could be compromised. And that’s not acceptable.

Dr. Lin and Dr. Shaw are already in conference per my case. It bites to have an effective therapy waylaid because of side effects. But it happens.

Uncertainty. Once again, embraced. Because right now it is the only thing to hold on to.

Didn’t see this coming

When I first started my combo of binimetinib and lorlatinib, I was referred to a retinal specialist, as MEK inhibitors can cause retinal problems. My exam showed some very mild retinal changes.

I had a routine follow up appointment today and I now have blisters on both retinas; yet considered mild retinopathy but concerning enough that I am off binimetinib and advised to go to the emergency room if I experience any visual changes.

I asked the retinal specialist why MEK inhibitors have this potential side effect and she said they felt it was an auto immune response. Well, I’ve got split fingertips, pustular acne, mouth sores, slowed speech, cloudy thinking, and some pretty troublesome neuropathy in addition to my current eye issues. Not to mention high cholesterol, elevated creatinine and low iron. Why can’t killing cancer be easier?

This is a tough spot to be in. I know that binimetinib and lorlatinib have shown efficacy against my cancer. But it is highly possible that the combined toxicity shall ultimately prove intolerable.

This is a good time to remind my audience that this is the explicit purpose of phase one trials: evaluating toxicity and establishing maximum tolerable dose. The actual experience can be as brutal as it sounds.

I have scans tomorrow, review on Monday. And I am certain a discussion as to how to proceed shall ensue.

Dream home

I have been close enough to being homeless that I never take a roof over my head for granted. Never. Ever. On walks, I instinctively look for the place I would bed down if needed. And whenever the weather is particularly inclement I repeat, like a prayer/chant/mantra–I am glad I have a home. My first two children, who were almost homeless with me, grew up hearing these words. And I would imagine it is something that remains firmly ingrained.

My current apartment is lovely. Good bones, both physically and psychologically. I am grateful I landed here before the pandemic. And also grateful that I have the money to pay rent.

However, this unit is missing a few things that are on my wish list for forever home. A bath tub, for nights like tonight that are not just cold, but bone chillingly damp. A hot bath, good book and a glass of wine are all I need to set the world right sometimes.

A fireplace. That smell, that crackle, and once again, that warmth.

Laundry room. Not even necessarily a room, but someplace other than an earthen floored basement down a rickety staircase.

Fenced in yard. I love walking Kumo but then again, sometimes it would be nice to open a door and simply tell him to go. It is supposed to get down to ten degrees tonight, and the wind is howling. This is the sort of scenario I have in mind. And Kumo? He would love to have some grass to lie in, come spring and summer.

A garden. I so miss growing things. And the incredible meditation that is watering–never a chore, always a damp pleasure.

And now–true pie in the sky. Wouldn’t it be lovely to have a studio just outside my door; to be accessed at all times of the day.

To conclude? Shoot the moon. A partner, to share this all with.

A girl can dream 🙂

xo