From the Midst of the Blur

An Overdue Update

It’s been too long since I’ve written - even longer than I realized (my last update was April 12?!?) - and I apologize.

Life has been a blur these past three months, and it’s been difficult to find the time and emotional bandwidth to write. But I realize that people worry if they don’t hear from me, especially those people who don’t see me in real life (which is most of you), and I’m sorry for that. Unfortunately, any medical update I could’ve offered before now would’ve been potentially more worrying than no update at all.

The Headlines

I’ve had disease progression.

I’ve been off treatment for more than 10 weeks (not by choice).

I’ll be starting a new clinical trial tomorrow.

The Details (more details than you could possibly want to know)

Disease Progression

I first got the upsetting news of progression nearly two months ago, after my St. Louis radiation oncologist ordered an MRI to see how well the treatments he did in February had worked. The good news from that scan was that those treatments worked really well on the liver lesions he treated. The bad news was that the scan revealed new tumors in the liver and elsewhere.

Since starting this particular chemo regimen (Trabectedin) in October, my results had been mixed - some modest tumor shrinkage, some mild tumor growth, and some tumors that stayed the same size. This was an overall picture of stability, which meant I could keep staying on the drug.

The problem was the chemo affected my blood counts enough that I routinely had to have treatment delays (even though I was already on a decreased dosage of the drug). Between the reduced dosage and the treatment delays, I never really got to have the benefit I think this drug could’ve offered me. But this is what can happen when you are “heavily pre-treated” - your body wears out not from the cancer itself, but from the treatments. I’ve been in active treatment since February 2018, and my immune system has paid the price.

I had really wanted to be able to stay on this drug for longer than seven cycles - it was so mild and easy to tolerate (other than the blood count issues). I didn’t want to be back in decision-making mode, especially when I already knew I’d be deciding from very few good options. But one look at those MRI results and, even without knowing how things looked in my lungs, I knew it was time to stop this drug and move on.

10+ Week Treatment Hiatus

I was supposed to see my oncologist and have my next Trabectedin infusion six days after that MRI. I figured we would discuss options for my next treatment regimen. I thought she might recommend I go ahead and have one last infusion, since I wasn’t getting no benefit from the drug - I just wasn’t getting enough benefit.

Unfortunately, I had to cancel those appointments, as I woke up dreadfully ill. I was in bed for five days with what we first thought might be COVID (the main features were fatigue and a bad non-migraine headache that wouldn’t go away even with usual headache meds), but I tested negative on PCR and repeatedly on at-home tests, and I became suddenly well, just in time to help our sons get ready for prom.

My oncologist and I discussed possible treatment plans via back-and-forth messages in my medical portal. We would pursue two different clinical trial options - one that I’d found in Pittsburgh and one that she knew of here at Michigan Medicine. By the time I was able to see her on June 1, it looked like one of those was going to work out.

Clinical trials typically require a washout period between stopping other treatments and starting the clinical trial. The washout helps ensure against confounding the results of the study - it keeps the results purely related to the trial drug, rather than potentially mixed with results of a previous treatment regimen. Because we expected the washout period for the studies we were considering to be either two weeks or four weeks, it didn’t make sense to get another Trabectedin infusion at that point, even though I’d been off treatment for more than five weeks. We wanted me to be ready to start a new drug as soon as a trial could get me started.

Disappointment and Delays

I was really excited about the innovative experimental clinical trial I’d found in Pittsburgh. It was a trial of tumor-infiltrating lymphocyte (TIL) therapy, which has had promising results in metastatic melanoma and metastatic cervical cancer, with some patients getting a durable, complete response - i.e., permanent remission, or what some would even call a cure.

Tumor-infiltrating lymphocytes are a type of immune cell that can recognize and kill cancer cells. The therapy involves removing TILs from the patient’s tumor, growing a lot more of them, then putting them all back in the patient, where they will attack the cancer. It’s like creating an exceptionally personalized immunotherapy from the patient’s own body.

The trial in Pittsburgh is physically rigorous and would mean being away from home for a period of time, but I was extremely hopeful about its potential. My oncologist and I began submitting all the necessary records and scans to the research coordinator there even before we knew for sure that I would not be staying on Trabectedin.

In early June, I received the bad news that I was not a good candidate for this trial. Growing the TILs needed for this therapy requires harvesting substantive, healthy cells. The coordinator explained via email:

That is not common in everyone we screen, but we know it’s not possible in a situation like yours when the counts are already so low.  We know that it just won’t be a good treatment for you based on all our prior research on the immune system.

I was pretty devastated. I’d gotten my hopes up about this trial, and now it turns out my wrecked immune system is not only making it difficult for me to do regular chemo regimens, it’s knocking me out of the possibility of even experimental options.

Fortunately, we had begun simultaneously moving forward with getting screened for the clinical trial here at Michigan Medicine. I thought that meant I’d be able to start treatment on that study fairly quickly. But oh, I was so wrong.

The trial required multiple steps before I could begin treatment: a new set of CT scans, a tumor biopsy, and an eye exam with one of their research ophthalmologists (one of the possible side effects of the trial drug is cataracts, so they require a baseline eye exam and then regular eye exams throughout the trial). Getting all of that scheduled took much longer than expected.

It turns out that this trial is understaffed, which has been causing back-ups and delays. I should note that this is not a sarcoma study and therefore my oncologist is not involved in overseeing the trial. It’s what’s known as a “basket trial” - a trial that investigates a drug across multiple types of cancer. I was the last sarcoma patient admitted to the trial before they enacted a 30-day moratorium on admitting new patients so they can catch up. Phew!

I got the final pre-trial step done (the biopsy) last Thursday, June 30, more than four weeks after my doctor and I decided not to do another Trabectedin infusion so that I could ready to start the trial right away. Turns out that for this study, the chemo washout period is two weeks, so I definitely could have had an infusion in early June and been just fine. We had no way of knowing that at the time, of course. But now I’ve been off treatment for more than 10 weeks, during which time the cancer has continued doing what cancer does - growing, multiplying, refusing to die.

Unchecked Disease Progression

It’s one thing to be off treatment when the situation is stable. It’s a whole different matter to be off treatment when the disease is already progressing. It’s a scary situation. This time, it’s been even scarier because I can actually feel the cancer growing.

I developed pain under my left arm if I held it too close to my body, which led me to discover a lump under that arm weeks before my recent CT scans, which confirmed a tumor was there. I also began feeling pain behind that shoulder if I moved my arm in certain ways. I thought that was also from the lump under my arm, but the CT scans revealed another new tumor in one of my rotator cuff muscles which is presumably causing that pain. Within the last week, I’ve begun actually being able to see the outline of that tumor. Several days ago, I felt another new tumor less than two inches from my cervical spine. Meanwhile, over the last few weeks, I’ve been feeling pain in various parts of my skeleton (my right rib cage, my thoracic spine, my lumbar spine) that I suspect are bone metastases. Only one of those places showed up on CT, but for me, bone metastases don’t usually show up on CT until they’ve already caused damage. This isn’t everything going on, this is just the stuff that’s causing pain or discomfort.

It’s been horrifying to know that the cancer is just doing whatever it wants, and to actually feel it doing so. I’ve been terrified that something catastrophic would happen again (like it did when I had metastases to my pelvic bones while between treatments last summer and the next thing I knew, a tumor had severely and permanently damaged my femoral nerve). I’ve also been scared that the disease would progress to the point that the trial drug simply would not stand a chance of beating it back.

It’s a minor miracle that I’ve made it through weeks of this without coming completely apart, emotionally and mentally. The whole thing has been nearly unbearable, but I’ve had a lot of major life events and milestones to get through these last three months (the biggest one being: our twin sons graduated from high school!), and I’ve needed and wanted to be present and engaged in every bit of it without letting anything about my diagnosis cloud things for my kids or anyone else (except for me, obviously, and also for Paul, who knows all the excruciating details).

The past two weeks have been the hardest as I waited for day one of the trial to actually be scheduled (my oncologist had to put pressure on the system to get things moving on that count, and it finally showed up in my portal five days ago). I absolutely hate to ever wish a single day of my life away, but I’ve been just sort of willing myself to get through each day (and to get through each day without a catastrophic event), and I’m relieved to wake up each morning one day closer to starting the trial.

Clinical Trial Day One: Tomorrow!

And now here I finally am, on the eve of starting a new drug.

The trial is a Phase 2 trial of an oral RAD51 inhibitor, a targeted treatment related to DNA repair. In the Phase 1 trial of the drug (currently called CYT-0851), one of the best responses was seen in a patient with sarcoma. The side effects of the drug are supposed to be mild, and bone marrow suppression, which results in low blood counts, isn’t one of them. The drug is a pill I will take every day for as long as it works (assuming it works).

I’ll go to the cancer center in the morning for blood work and an appointment with my oncologist (for a total of about three hours), then I go back in the afternoon for another three hours in the research lab. It’s going to be a long and surreal day.

But I’m so glad that day has nearly arrived.

Gratitude

I have felt a lot of fear and sadness these last several weeks, and I know that comes through pretty clearly in this post. I’ve put off writing this because I don’t like sharing so much fear and sadness - and I don’t like giving other people cause for fear and sadness. But fear and sadness are not all I feel.

I feel so much gratitude. I’m grateful for science, always. I’m grateful for my oncologist and her team, and for my radiation oncologist in St. Louis, and for access to clinical trials. I’m grateful for the kind CT tech who got me set up for my recent CT scans and for the really kind ophthalmologist who did my eye exam last week and for the truly special (and fun) team who did my biopsy last week. I’m grateful for my physical therapist who has continued to help my femoral nerve heal beyond what I thought might be possible.

I’m grateful I was able to be fully present and engaged for these last months of school for my sons, and I’m beyond grateful I got to see them graduate from high school, and that we got to celebrate their graduation with friends, and that so many people care about them.

I’m grateful for the ongoing prayers, concern, and love of so many.

I’m grateful you’ve read this far (if you’ve read this far!).

I’m grateful that I only have one more sleep before finally starting this clinical trial. I need it to work for me. I hope it will work really well. I hope it will work well for a long time. Please pray that it will work. (And, as always, if you aren’t a person who prays, please hold me in warm and loving thoughts!)

Thank you for being out there. Thank you for wanting to know how I am, even when the news isn’t great. Thank you.

at my last infusion, April 22