Jen's Cancer Fight Message Board: Awaiting Jen's next scan & another crossroads

Jen's next scan is tomorrow. Please send all your prayers and positive thoughts Jen's way.

We are also facing another major decision with no easy answer. After almost 9 months of pursuing and waiting for an open slot, Jen has finally been given a date for the first phase of the Car-T trial at City of Hope. Pardon me again if I get a bit wonky as I attempt to explain the details.

The Car-T trial (a powerful form of immunotherapy known as chimeric antigen receptor (CAR) T cell therapy) has 3 phases:

The first phase is a process called Leukapheresis. This process essentially separates out a specific type of white blood cell from Jen's blood. This process takes several hours as her blood is filtered.
The second phase involves reprogramming these immune cells to recognize and attack a specific protein found in cancer cells - one that Jen's tumor tissue has already been tested for and is positive within her tumors. The newest form of CAR-T cell therapy, uses “memory” T cells which remain in your body after attacking the cancer. The hope is that they then grow into an active reservoir of cancer-killing cells capable of stopping future outbreaks. The procedure to create these special cells takes about 40 days for technicians to separate the white cells, enrich them in the laboratory, then add a unique virus to introduce DNA that instructs the T cells to recognize and attack cancer cells. These newly reprogrammed cells are then grown to larger numbers, and then tested for safety.
The third phase involves surgery to debulk any actively growing tumor that is operable. An external port is created. This port goes deep into the tumor region and possibly adds additional locations for someone like Jen who is multi focal. This port is then covered by a flap of skin so that access to it can be easily gained. The engineered Car-T cells are then reintroduced into the patient’s system, where they get to work destroying targeted tumor cells. The patient may have several courses of these Car-T cells injected into the brain. The number of doses will depend on how many they are able to create and grow and may also depend on where they with regards to the trial itself. This is a phase I trial and as such they are still in the process of continually escalating the dosing until the side effects become an issue. Obviously, since this is a phase I tiral, safety is not guaranteed. Due to the localized delivery however, side effects so far do appear to be minimal. As the dosing continues to escalate this could change though.

So, Jen has an appointment for the first phase of the trial or the harvesting of her blood. It will then take about 40 days for the engineered cells to be ready to inject. The third phase also cannot be done if she is not presently recurrent (meaning showing active tumor growth). However, the Car-T cells can be frozen once created for future use. We love that idea, since if Jen becomes recurrent again there won't necessarily be a lot of other options. Here's the quandary. In order for Jen to even undertake the first phase of the trial, she needs to be off any active cancer treatment for 2 weeks prior to the date for taking Jen's blood. The chemo is not a problem. If Jen's scan tomorrow is stable, she will be able to undertake her next cycle of chemo and will have about 2 1/2 weeks before the date of the blood draw. Her next scan in fact would be the day after the blood draw, so if everything remained stable she would even be able to continue with an additional chemo cycle on schedule.

The problem is the Optune device Jen wears on her head. She would also have to discontinue using this for 2 weeks prior to the blood harvesting. On one hand, the sores on Jen's head are pretty bad and her scalp could definitely use the break. But we are both more than a little trepidatious about stopping it's use for 2 weeks. She might be okay, but what if the chemo and the Optune are having a synergistic benefit and taking a hiatus causes the cancer to grow? If this happened, she wouldn't even be able to use the Car-T cells because they wouldn't be ready for about 40 days. One must also keep in mind that all of this is for a clinical trial that may end up having no benefit. In fact, most clinical trials yield no benefit, but some like the Optune device, which in fact was just recently classified as part of the new standard of care by the NCCN (National Comprehensive Cancer Network) do prove to have a benefit. Perhaps this trial will yield new hope - or not. I personally think it is an unfair ask to require the patient to have to stop using Optune. The device in no way affects Jen's blood. I don't believe she should be required to stop it for the first phase of the trial. But, this is what they ask, so we have this decision ahead. We know that Jen already had a recurrence, so what she is presently doing is buying time, but is definitely not a cure. We expect that she will have another recurrence at some point - hopefully at a very distant point down the road. Of course all of this is dependent on Jen's scan tomorrow. We will discuss all of this with her doctors, but ultimately they can't provide any definitive answers as to whether stopping the Optune for this period will be without consequence. Jen and I are both on the fence on this one. Hopefully we will have better insight in the next few days.

As I am writing this, Jen is working out - go Jen! Jen did have a very mild seizure yesterday, her first one since the end of January. Nothing too alarming as she seems to have 1 or 2 about every 2 months. On a lighter note, I would like to share a few photos from this past month as Jen and I keep enjoying life.