Dear Friends,

The time has passed quickly and I find it’s already been a couple of months since we’ve given you an update. It’s been a tough road, as we expect when being systematically poisoned. But sometimes chemotherapy is the best we’ve got. Sherri has been back to the balancing act between the pain of side-effects management, and the side-effects of pain management. In other words, its a vicious cycle…

I promised to update you on a few things the last time: the results of the previous CAR-T trial at UPenn, where we are in the scarf chronicles, and the status of upcoming immunotherapy clinical trials that we are monitoring. When we left this story, our heroine had recently finished a clinical trial that created a clone army of genetically modified t-cells. This trial worked for a time, keeping the tumors stable with far fewer side-effects and relatively good quality of life. As it came to an end, the team at the University of Pennsylvania was beginning their analysis. As it turns out, Sherri was the only patient in the trial that had a positive outcome – all the other participants saw continued progression of their disease. So they are now back to the lab with another variation of the technique to see if they get better results overall. We are on the waiting list for this new one as well, but it’s apparently a ways off.

Since there were no other trials on the near horizon, we figured the law firm of Gemcitabine & Abraxane might be available… Ok, that’s a lie; they are not a law firm. Gem-Abraxane is the new chemo kool-aid that Sherri’s oncology team recommended. Well, not really kool-aid; maybe we’ll call it one-two punch. Any hoo, the point is that it sucks when they put this stuff in your bloodstream. Right on cue, she converted a full head of hair to a patchy fuzzy peach. Along with other side effects, she has more pain and fatigue to deal with. So it’s just been hard to get stuff done. Today, we also got the results of a CT scan taken yesterday. The bottom line is that this treatment is not working. There is growth, primarily in her liver tumors but marginally in her lungs as well. It is not alarmingly aggressive (the radiologist called it “moderate progression”), but we are looking for shrinkage so this is clearly going in the wrong direction. Docs recommend stopping this treatment and moving on to the next option.

We already knew this chemo was only a temporary solution, so in the meantime, we had thrown a wig into the ring for a new clinical trial in immunotherapy. This UPenn trial is targeting the protein PD-1 that regulates the immune system by preventing the activation of T-cells. Inhibiting PD-1 lets the T-cells go to work doing what they do best. This technology has shown positive results in other types of cancer, and in fact there are some parallel trials using the same techniques for pancreatic cancer at other institutions. So far, Sherri has been deemed ineligible for the UPenn trial due to her previous problem with inflammation of the pituitary gland (this occurred during our first immunotherapy trial at Johns Hopkins). We are still working the system to see if we can be admitted to this or a similar trial, and also looking at alternatives.

Three additional alternatives in front of us for consideration are:

  • A trial at Fox Chase Cancer Center that uses an antibody that binds to pancreatic cancer to carry a radioactive isotope called 90-yttrium that targets the cancer cells. One problem with this trial is that it’s a double-blind test and one-third of the patients get a placebo.
  • A relatively new treatment being used successfully in breast cancer that targets a particular gene mutation that showed up in Sherri’s genetic profile when we ran those tests back in 2013. The docs are checking into it to see if it makes sense to try it. There appears to be little down-side, but it’s unproven for pancreatic treatment.
  • A return to the FOLFIRINOX chemotherapy, which had very good results in the initial round (with some escalating side-effects, of course)

It’s been a tough couple of months in our community and other families close to ours have been thrown into turmoil. Together, we find the courage to continue. Thank you yet again to everyone who has summoned the time and energy to reach out in so many ways.


7 thoughts on “Progression

  1. Much love to all of you and we cannot wait to see you in a few weeks! Your combination of grace, intelligence and grit continue to be an inspiration. Hugs, Missy, James, Meghan and Ryan

  2. Thanks for the update Coopy. Whoo, what a scientific ride!
    Like Sharon said, love love love love love to you all. xox

  3. We have you all in our thoughts everyday, and pray that things will stabilize and turn around.
    Love to you all,
    Tom Sarah, Lydia and Will

  4. Just catching up on this blog now. Wishing you some peaceful family time now that summer is upon us. Sending constant love for all the side-effects of your situation. Love you, Coopy and Sherri! <3

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