A Long Awaited Update

I have been waiting months to write this blog post – eleven to be exact.

I am finally back in treatment, and this time, it’s something entirely new… so new that the FDA hasn’t even approved it.

Three weeks ago, I started an oral chemo called Nirogacestat. It is a drug that is somewhere in the phase two or three with clinical trials. I had previously not qualified for this trial because my tumor had not grown “enough” in the previous year. Last August, after my liver enzymes rose to meteoric heights thanks to Votrient, my oncologist mentioned receiving the drug through something called compassionate access. Compassionate access, also known as expanded access or compassionate use, means that I’d be able to secure the drug without the study. The benefit would be that I’d receive the drug without the possibility of it being the placebo.

There were so many countless hurdles and many tearful nights I spent waiting for the access to be secured. It meant that my oncologist had to write a protocol specific to me: which, fortunately, was not too hard, since he had patients in the trial and was able to use that to start. After that, the protocol had to go through the Penn IRB, which is basically the ethics board at UPenn. Then it had to go to the Food and Drug Administration for approval, at which point it would then be approved and I would be able to start. I chose not to tell most people what I was awaiting, since I am superstitious when it comes to moments like this.

I experienced so many stops and starts with this drug. COVID held up everything, as it is wont to do. I got a notice the week of my birthday in May that I’d be receiving a call to schedule my first appointment. I was over the moon and called my family and let my friends know. Then there were some snags, of course. Turns out the pharmaceutical company changed the packaging to include 100 pills instead of the previous 90, so the whole protocol had to be reissued to the IRB at Penn. I was then able to sign the all-important consent on June 21, but of course, I ran into even more hurdles. 

I needed to have a baseline MRI completed, and as my medical insurance changed, so did my coverage. While my oncologist at Penn was still covered, radiology was not. I needed to schedule with an outside provider. While that was not the hard part, the provider did not accept digital scans. I needed to be the carrier pigeon: going from Penn to the radiology center in New Jersey, then the radiology center the next day back to Penn. It added about 3 days overall to the process, which seems like ages when you’re awaiting results. Thankfully, my tumor is overall stable-ish (it’s only grown a bit).

Finally, on July 14, I took my first dose at Penn. I wore a tshirt I made with the help of a friend specifically for that occasion reading “je suis prest,” or “I am ready” in French (old French, as many soon pointed out to me.) It’s the motto for the character of Jamie Fraser in Outlander, a series I devoured while awaiting the next phase of treatment. I’m experiencing a lot of the same side effects I’ve come to know from previous treatments, so it makes it easier to manage for the most part.

So here I am. It’s August and I’m taking a social media advocacy break, but I wanted to share with you the latest and let you know I’m still alive and kicking. Hopefully the next swift kick will send this tumor packing.

May be an image of Christina Kosyla and standing

8 thoughts on “A Long Awaited Update”

  1. Wishing you the best outcome during this trial! I feel you as my tumors returned ( 3 to be exact same place Thorasic 3 ribs already gone first time around , now another 2 and left partial lung. It’s returned within 1.5 yrs already not looking forward to future again treatment . They say it’s too dangerous for surgery to remove because one showed up by spleen this time other two on lower left ribs. So Stanford is taking my case to help me get these aliens out of me… I bulldoze on ( my moto through this” )


    1. Thank you so much for your well wishes. I’m so sorry you’ve had a recurrence, and I truly hope that Stanford can be of help. Please keep me posted on your health and know that I’m keeping you in my thoughts. Bulldoze on!


  2. You too! I have been following you fir 2 yrs. since my Seester found you. She tries to raise money every birthday of hers for the Desmoid research! I find your blog very informative and comforting you say it like it is and going through it we both feel for one another during our journey… whether good or bad right! I continue to keep you in my prayers! Take care I continue to follow! Good luck and wishes always!


  3. Hoping this is it and your tumor doesn’t know what hit it. Prayers for the best outcome. Thank you for sharing your news. Kathy Mignone


  4. So happy to hear this update. You accept challenges as adventures – with positivity and strength and you find the little joys on your road to good health. Tu est prêt!!
    You are always in my prayers,


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s