REGN4018 Clinical Trial: Patient Perspective (Week 5)

The good news week!

I’m not going to bury the lead or go in chronological order this week. 

My recent scan was positive!!!!!!!!!!!!!!!!!!!!!! Positive meaning there’s less cancer in my body than there was when the trial started.

I had a CT with contrast Thursday morning at 8:15 a.m. By 10 a.m. my oncologist was checking in on my fevers via text and I let him know they were manageable but I was nervous about my scan results. 

He asked, “Would you like me to call you with the result?”

I said, “Yes, please if you can.”

I LOVE my oncologist. He is this kind and responsive always and to all of his patients.

He called 15 minutes later and said the scan looked good.

By good, he meant lymph nodes around chest looked better, lymph nodes near my armpits TONS better (and I felt those disappear), and my pleural fluid was much better.”

He said, “it’s a positive scan,” and since it was done after only 5 weeks and four treatments, this was thrilling, shocking, exciting, and hard to believe. The second combination drug hasn’t been started yet (that’s planned for next week)…. 

He also noted that my CA125 was down by more than two-thirds (even before the fourth full-dose of Regeneron) or the second drug has been added to my treatment.

I had stopped tracking my CA-125 number because it is an exceptionally reliable marker for me and as it was climbing higher and higher it was freaking me out. I had to stop tracking it how fast it was rising because I was obsessing over it and stress is good for cancer but not for my health.

To get the good news that my CA-125 had gone done significantly was a bonus. 

My friend Heidi asked me how I was going to celebrate and offered to come by. But I was so relieved I was almost drunk with tiredness. I felt like my limbs were lead and that every cell in my body exhaled. I took a nap, a short walk (and yay that I felt well enough for that). That has not been the norm.

I’d been invited to give patient input on clinical trials and was well enough to attend so that is what I did for an hour and half on Thursday night. That might seem strange but it felt perfect and satisfying. It made me feel useful and alive and for most of the past month I’ve just been in survival mode. Plus, It is nice while in a clinical trial to be asked about the experience and how it could be improved (I had lots to say but that’s another post). 

I was able to eat dinner (another win), make some plans for Friday, and then I fell asleep at 7 p.m. on the couch and went to bed at 8 p.m. I slept for about 12 hours.

This morning, I’m believing the news. This morning, I’m starting to let the tears and happiness in. 

This morning I’m celebrating in small ways such as listening to music while I feed the cats, and dancing around the kitchen, and being grateful to want to eat.

I’ve not seen the scan report myself yet but was told by the clinical team that the “Measurement of the CT was 30% better. Fab,” which was a nice note to see.

May the shrinkage continue and continue and continue!

I could not have done this past five weeks without my loved ones. I’m always asked at the hospital if I have enough support – especially since my former partner moved out – and I always say, “Yes, I’m so lucky. I have more support than I can even access. I have a huge and loving family and the best friends in the universe.” 

I know this is monumentally rare and how lucky I am.

I am happy for more time with all of my loved ones and with life itself.

P.S. OMG – Has anyone seen This is Us in the last two weeks. This speech. This speech. This speech. It’s from the Rebecca’s character on this amazing TV series and I could not agree with these words more.

“I need you all to hear my voice right now, your mother’s voice will all of her faculties.

You will not make your lives smaller because of me. This thing that is happening to ME will  not be the thing that holds YOU back.

So take the risks, make the big moves even if they are small moves. Forge ahead with your lives in any and every direction that moves you.

I’m your mother and I’m sick, and I’m asking you to be fearless. And if that seems like a tall order, well, guess what? It is, but the only acceptable response is a resounding, ‘Yes Ma’am.”