Friday, August 3, 2018

Another progression & more timing issues

Jen's latest scan from yesterday wasn't ideal.  There is more growth, although the scan is a bit inconsistent.  The contrast enhancement shows growth of the cancer while the T2 flair (which is often more accurate following Avastin) seems stable.  Nevertheless, the growth in the contrast enhancement seems significant enough to consider the scan a progression.  Honestly, neither of us was that surprised considering Jen's increased speaking difficulties.  This is now Jen's third progression in just a little over 3 months.  We keep hoping to find something to hold it at bay for a while and haven't had much luck lately.

The timing for the CAR-T again seems to have run into a little bit of a bump in the road.  Jen had been on track for surgery on August 14th with the CAR-T infusions beginning sometime around Sept 4th, 5th, or 6th.  Apparently one of the patients in the current batch had a slight delay and the earliest they can now begin the infusions is on September 17th.  That is almost 5 weeks from the date of the surgery.  An ideal time frame is 2-3 weeks at the most. The problem with doing the surgery too early is that the cancer will most likely grow back completely during this extended time frame and the infusions will have a reduced chance of being effective.  Also, because of the location of Jen's cancer, they will not be able to get all of it, so we are essentially looking at going almost 7 weeks for a new treatment to start for the area that can't be resected surgically.  We had discussed delaying the surgery, but there is concern that operating later could also be more difficult if the cancer grows too much.  If Jen begins another type of chemo, it wouldn't wash in time to do the surgery and again we have concerns that it could tank her platelet counts too much.

We have come up with a plan though that may bridge the gap.  As I mentioned previously, we were exploring an immunotherapy drug that has worked for a lot of other cancer types.  We applied for compassionate use and a financial hardship waiver.  We have heard back from the drug manufacturer and they are willing to give the drug to Jen for free.  The good thing about this drug is that there is only a 2 week wash period before surgery.  So as the plan stands currently, Jen will receive an infusion of Keytruda (the immunotherapy drug being used off book) on Monday.  She will then have surgery on the 28th of August and begin receiving CAR-T around the 17th of September.  Obviously a lot can change and we have no idea if this will even work, but considering the timing issues and Jen's limited options this is probably her best chance.  There could even be an added benefit.  Both Keytruda and CAR-T are immunotherapies.  They could work synergistically and there is research showing that immunotherapy drugs may actually work best by delivering prior to surgery, followed by resection, followed by additional immunotherapy.  Delivering a pre-surgical dose may actually prime the cancer in a way that is more effective.  Whether or not any of this will work for Jen and her cancer is a large unknown.  But Jen's doctors and both of us feel it's worth trying.  We both know it's a long shot, but hopefully it works.

As always, please keep us in your thoughts and prayers.


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