Wigging Out

It was nice while it lasted, but it looks like the impacts of the immunotherapy trials are starting to wear off. Or maybe the cancer is insidiously adapting. One problem with clinical trials is that you can’t continue them even if they are working – they are limited tests followed by a period of data analysis, review, and regulatory process. It’s a valid implementation of the scientific method; we are very interested to see the results of the complete trials but we’ll just have to wait for the interpretations. We’ll keep you posted.

In the meantime, we need to start on the next phase of treatment. Sherri’s CA 19-9 marker ramped up into the 600s, which indicates that the cancer is back on the move. This week she had a CT scan, and sure enough it shows increased growth of the tumors in her liver as well a few small lesions identified in her lungs. The pancreatic mass is also visible in this scan; it seems stable even though its children are growing up next door. Sherri has been noticing her symptoms amp up lately, so this is not really a surprise (though it is, of course, a disappointment).

Sherri is scheduled to start a new round of chemotherapy this week to try to knock this back. Her Fox Chase team has recommended a different cocktail than the last time, Gemcitabine + Abraxane, which is another approved first line treatment. Even though the FOLFIRINOX (her previous concoction) is a proven performer with Sherri, chemotherapies usually have a limited period of usefulness and tolerability, and the docs believe a combination that the cancer hasn’t seen before might be more effective at this point. Some of the side-effects are familiar, with the added likelihood that she will lose her hair within a couple of weeks of the initial treatment. So I guess we’ll be scarfing, and wigging out. On the optimistic side let’s go for the hat-trick of 3 successful treatments in a row!

In parallel, we are on the waiting list for a new trial at UPenn that focuses on a PD-1 inhibitor that has shown promise in other research. PD-1 is a protein that regulates the immune system by preventing the activation of T-cells. Similarly to other immunotherapy treatments, the idea is to activate the immune system so it will attack the cancer, in this case by persuading the PD-1 to let the T-cells go to work. This particular trial also attempts to attract the immune system by damaging individual tumors with radiation. There are dozens of other clinical trials in the works for pancreas cancer treatment, so we are always on the lookout for more alternatives!

Bryn Athyn College recently held another “Shooting for Sherri” fundraising event with a double-header home basketball game. This is yet another example of the creative ways that you all are making a difference in our lives, and in the lives and futures of countless others who are battling tricky diseases. We hope you will join us in realizing that the exciting progress being made in immunotherapy research is made possible by your concern and your action. Thank you.


[Recent update on the Support Page!]


New Year

Dear Friends,

So it’s 2015 and it’s good to be here. Somehow we’ve plowed through the shingles, though it lingers; got the holiday festivities under control; hosted a company Christmas gathering; visited the Coop clan in Maryland; and took care of our year-end business.

Throughout the holiday season, we continued to receive heartwarming support from our community. For example, a “Pay It Forward” team of volunteers appeared during November and put their backs into wielding power tools, carrying tree parts, raking 2 acres of leaves, and tearing down literal fences for no other reason than to help us get some work done in the yard. Can’t beat that with a stick, because they took them all! Then in December, twelve days of gifts were left anonymously at our door leading up to Christmas. Not sure how a partridge, turtle doves, french hens, calling birds, golden rings, laying geese, swans, milking maids, dancers, leapers, pipers and drummers came by without making a racket outside, but their transport remained undetected. On behalf of our family, thank you for these thoughtful gifts, and the gift of your friendship!

As for kicking that cancer in the pancreas, we continue to trust but verify… We’ve been watching for signs, and in their absence have been able to take a little break from focusing on it. In reality, it’s a bit problematic to focus on anything with shingles in your eye, as you might imagine. That’s been a slow recovery process and Sherri is still feeling the nerve pain and itchiness along the optic nerve on the right side of her face even though the “rash” itself has been cleared up. We have had a couple more follow-up visits with our UPenn team to review the residual effects of the CAR-T cell trial that finished in October. No scans lately, but based on blood parameters and observations, they’ve recommended that we accept a lull in the action and stay off the cancer treatments for the time being. Twist our arms…

There are a few interesting facets looking back at the last few months. For one, it seems that the pancreatic tumor, the source of all the turmoil, has gone missing! Starting with the September scan, and consistently since, radiologists have been reporting that “there is no focal pancreatic mass visualized.” Um, you mean you lost it? We’d like to attribute this to the immunotherapy treatments because the chemo didn’t seem to be changing that pancreatic mass. Unfortunately all its children have left the nest and seem to still be prospering in other organs.  Nevertheless, it’s a positive sign that makes us want to continue this course of action. Our team at UPenn has noted that the cancer seems to be indolent (slow to change), which gives us some runway for considering additional leading-edge treatments. There are quite a few promising immunotherapy trials coming up – it’s good to have options!

Another good sign is the continuing stability of one of Sherri’s cancer markers in her blood: CA 19-9. The last couple of months showed zero change in the parameter. Steady is very, very good right now. Many people have this shoot up immediately when they get off treatments. Here is a visualization for you data hounds. We think this is a very reasonable result and take encouragement from it!

Progression of Sherri's CA 19-9 cancer marker throughout treatments. Interesting and encouraging if you are a data nerd like us!

Progression of Sherri’s CA 19-9 cancer marker throughout treatments. Interesting and encouraging if you are science nerds like us!

There is reason to be optimistic, though we recognize a tough road lies ahead. There are still no magic bullets for pancreatic cancer, but there are some promising new technologies and we are happy to be part of pushing the edge!

It is our pleasure to wish each of you good fortune in the new year. And thanks again for checking up on us!

-Dave, Sherri, Zia and Anji

Thank you to the anonymous support group who provided us with a series of gifts left at our front door leading up to Christmas. It was a lift!

Twelve Days of Christmas. Your gifts provided a lift!


Plus or Minus

Hello fans,

We’ve been hovering around a balance point with the CAR T-cell immunotherapy for several months now. There are pluses and minuses…

On the plus side, Sherri’s scan on Nov 5th indicated that the tumors have remained stable. We have another checkup scheduled at UPenn on Dec 4th then one more in January. So far she’s staying off the chemo to see if those T-cells can continue to hold the line on their own.

On the minus side, she has an outbreak of shingles in her eye and the right side of her head, woke up with a fever on Wed, and then found out her hemoglobin levels are below the threshold. So in place of the chemo, we have antivirals, anibiotics, and a blood transfusion going on. Um, is this really necessary? Maybe her immune system is distracted? I guess it’s all about priorities in there. By the way, Sherri recommends that we all consider getting a shingles vaccine. They are available from your primary care doc, but often you have to ask for it. Might be worth consideration, as I’m sure anyone who has endured shingles would attest!

In any case, we have been pressing forward with some travel plans recently. The picture below will confirm that we made a trip to North Carolina to hang with the Beaufort Blues gang – Sherri’s network of friends from their days at Duke Marine Lab. It was outstanding to see you all again — thanks for the effort to get everyone together and for your relentless support of Sherri at every level. We also made a trek through the east coast nor’easter on Thanksgiving eve to gather with Sherri’s family in a Bloomsburg PA winter wonderland for the holiday. We appreciate 4-wheel-drive, heat in the fireplace, good company in a busy household, slow-cooked turkey, and too many desserts.

Wrightsville Beach with the Beaufort Blues Band of Brothers and Sisters. Photo courtesy of Neil.

Wrightsville Beach with the Beaufort Blues Band of Brothers and Sisters. Photo courtesy of Neil. 11/22/14

Today is Sherri’s first ever blood transfusion. So while we are on the subject of Thanksgiving, thank you to whoever you are out there who donated your blood for the benefit of others. And thanks to everyone who makes it their mission to heal.




Quick update: Results are in from the PET/CT scan taken Oct 8, and indications are that everything is basically stable. Comparison of this month’s images with the scans from the beginning of the clinical trial (about a month ago) showed no new masses, and the sizes of the existing tumors look substantially the same. There seems to be activity, which could be good (immune system working) or bad (cancer cells growing). For now, we’re leaning toward good because just prior to the trial things were headed in the wrong direction and now they are just chillin’.

Next step is a scan on Nov 5 to see if the immuno-army can turn the tide and make some headway.




Hello Friends! We’ve been beating a path to south Philadelphia to participate in the CAR T-cell trial at UPenn. Schedules were tight as we’ve tried to keep up the routine around 3 or 4 trips each week. Despite the lack of recent updates, though, be assured that no news is good news in this case! Let’s rewind.

Sherri’s T-cells behaved themselves, reproducing as all good cells should. They received their CAR mods, and the new little T-bird hot-rods were ready to rock and roll for 9 infusions that started on Sep 8 and concluded today, Sep 26. In another moment of synchronicity, the last CAR infusion was given by nurse Portia (there is no substitute…) Sherri has now gotten back her cells, with interest: 4.6 billion of them, 516 million at a time. Each treatment involved about 6 hours elapsed time, including travel, prep, infusion, and monitoring. Actual infusion time? About 2 minutes per dose…

Sherri has been feeling a little fatigued after each treatment, but her energy started to ramp back up just recently. She felt a strange taste sensation and had an aura of creamed corn and garlic about her right after infusion, due to the cell carrier concoction. Nevertheless, all signs are good at this point; no adverse side-effects are surfacing. Too soon to tell what’s happening under the hood, but next week we should start to find out with a series of follow-up checks; a biopsy, physicals, and scans recurring into early November. No telling what our next steps will be after that. It all depends on what shows up, and more importantly, what doesn’t show up.

This has been a good experience, all things considered. It’s another nice relief from the chemo. UPenn Hospital has their act together and the research and clinical staff have all been top notch. Sherri says she still feels that this is the right thing to be doing. She’s a true scientist immersed in science, and a true spirit immersed in life!

Thanks truly for your continued support as well. Sherri’s remarkable appearance and calm demeanor in the face of all the turmoil are underpinned by her awesome people network. You are the bucket seats with leather upholstery, keeping us comfortable and secure on our journey. You even clean up nicely when we spill stuff on you.



CAR & Driver

The wheels have been turning on the “CAR” T-cell clinical trial. Sherri is now enrolled in the trial, and has started preparations.  But let’s not put the CAR-T before the horse; here’s how it works! As described by Dr. Beatty at UPenn: “A Chimeric Antigen Receptor (CAR) is an antibody engineered to recognize a specific protein on a cancer cell. When a CAR is inserted into a specific white blood cell called a T cell, binding of the CAR to the specific protein on a cancer cell will activate the T cell to kill the cancer cell.”

In practice, this is done as part of the multi-step process illustrated below. Sherri completed Step 1 on Tue, Aug 5 at UPenn. The process is called apheresis, whereby a whirring gizmo methodically sucks blood from your neck for a couple of hours. Granted, you get most of it back, minus some T-cells. The T-cells are engineered, then multiplied in the lab. Assuming this all works as advertised, next month Sherri will start to get her newly trained and cloned T-cell army.

Like Star Wars Episode II, starring Count Dracula.

Killer T

Source: Activating the Immune System in Pancreatic Cancer, Gregory Beatty, MD, PhD, University of Pennsylvania School of Medicine, March 2, 2012. Click the diagram to see the rest of the presentation.

While we wait for the T-cell genetic engineering to take place, Sherri is staying on the FOLFIRI chemotherapy regimen. It will be a few more weeks before we get a new CT scan to see how everything looks. Until then, we will stay the course, keep our fingers crossed, and follow through with these great opportunities being put before us.


In other news, the stars aligned for us to take a summer trip recently, highlighted by visits to NYC, Iceland, Oxford, London, Cumbria (UK’s Lake District), and Edinburgh. Fueled by the energy of her first trip to UK, Sherri rocked this 2000′ ascent of the Old Man of Coniston, overlooking Coniston Water in one direction and the Irish Sea in another. A bit of pub trivia: there is actually only one official lake in the Lake District (by their definition). The rest of them, including Coniston Water – which is 5 miles long – are apparently too small to qualify! They are reminiscent of the Finger Lakes in NY (or is it the other way around?)

Sherri on Coniston

Climbing the “Old Man” of Coniston.

So overall, Sherri is grateful to be in a place where she could take this summer trip, fighting her way through the nasty business of chemotherapy, and excited by the possibilities of the newly emerging CAR T-cell science. Me? I agree this is a great opportunity, but then I’ve always been a CAR guy.


The Devil You Know

As promised, we met with Sherri’s oncology team at Fox Chase, and it seemed pretty unanimous that she should start back on chemotherapy, so she’s been back on it. We appreciated getting some perspective from them on where we are compared to where we started. There is pretty definite growth of the tumors, but nowhere near where it started; this is a preemptive step to keep the re-growth under control. For anyone out there who likes to see quantitative data, here is what the progression looks like as documented in the CA19-9 tumor marker since first diagnosis.

Interpretation: The chemotherapy dramatically reduced the tumors, and immunotherapy kept things relatively stable with a much more tolerable set of symptoms to deal with. So Sherri is grateful for the reprieve over the past 6 months. Now we’ll see how the chemotherapy goes for the next round.

Her new treatment is similar to the original FOLFIRINOX, minus the oxaliplatin, which was the likely cause of some of the neurological symptoms such as cold sensitivity and numbing of the extremities. The new treatment is FOLFIRI, without the NOX. This is most of the concoction that worked well before, so we’ll be keeping an eye on how it does without the third component. The docs suggested keeping other promising chemotherapy options in our back pocket for later.

In the meantime, Sherri got a call last week from UPenn to interview her for possible participation in another, more aggressive immunotherapy. This is the RNA CAR T-cell treatment that we’ve been tracking – she’s been on the waiting list, and is now scheduled to meet with them in August to see if  she qualifies. It’s a Phase 1 trial, with only 10 patients able to participate, but it has great promise and we are excited to be part of it in any way possible. Check out this very informative presentation about “Activating the immune system in pancreatic cancer” from Dr Beatty at UPenn School of Medicine. Skip to slides 15-16 if you want a quick summary of the CAR T-cell process.

So there you have it. The devil you know vs. the devil you don’t. Choose your poison, and your metaphor. And keep your fingers crossed!


Plan C

During the Memorial Day weekend, along with remembering those who have served our country, we celebrated our 26th wedding anniversary with an escape to our old stomping grounds in Durham NC. We got to hang out together at a B&B in the revitalized downtown, and caught up with some good friends in local venues and on the waters, farms, neighborhoods, and gardens surrounding. Meanwhile, the girls stayed in Maryland and devised new ways to traumatize Aunt Sharon and Uncle John… Thanks to everyone who took care of us!

On our actual anniversary, May 29th, we swung by Johns Hopkins to meet with an endocrinologist regarding the pituitary situation (the “pitu situ“). We also took the opportunity to get the CT scan (originally scheduled for June 9) that is a prerequisite for the next vaccine treatment, and to check in with Sherri’s clinical trial team. She’s been enjoying a little extra energy burst courtesy of the steroids, and seems to slowly be getting the headaches under control. But this delicate balance of systems has been thrown a bit out of whack.

The CT scan showed substantial re-growth in her liver tumors, reversing some of the shrinkage from the original chemotherapy. This likely indicates that the immunotherapy treatment is less effective (at this point) than the chemo at managing the propagation of the cancer. She is also experiencing more discomfort lately compared to a month ago. Some of the growth could be inflammation, similar to the pitu situ, but we have to seriously consider the option of going back on chemo. This is disappointing and a bit daunting…

Steps we are taking now are to assess and narrow down next options. Last week: MRI at FCCC to determine if the pitu situ is under control, and checking on the CA19-9 tumor marker in the blood to see if it indicates that the cancer is on the move. This week, another CA19-9 checkpoint and meeting with our trusty FCCC team to get their perspective.

So we are resolved to implement Plan C. There are several chemotherapy options that are showing promise, but we also have to weight the possibility of using the FOLFIRINOX that has proven to work for Sherri but was becoming overly toxic in the previous regimen. Chemo has a history of working better after immunotherapy. We are also monitoring other, more aggressive immunotherapy trials because this approach still seems like the right thing to do.

As much as we’d like there to be black and white answers, there aren’t any in this business. It’s a constant trial and review – science experiments with hypotheses, results, and conclusions. All we can do is work on it, and try to keep it all in perspective. There is a bigger picture, and we are keeping that in mind.

Sherri & Dave in Durham NC

Sherri & Dave in Durham NC


The Master Gland

Wow, will you check out the Support Page and see all the great events that have been happening in honor of Sherri and the ongoing battle against this vexing problem we have among us? Great to see lots of family and friends and friendly families out at the latest event on Sunday! Music is being made, miles are being logged, money is being raised,  strength is being conveyed, and our minds are being boggled.

You’ll see in these events plenty of music and sporting activities. Music has been an important part of Sherri’s life, and it’s extremely meaningful and gratifying to have such talent in our midst. She loves the sports events where she knows the players, and revels in their accomplishments. Sherri might be out there on the athletic field except that she has been banned for steroid use.

There are mitigating circumstances for the steroids… She put her trust in the right people, ate tainted cheese steaks, whatever… Just trying to get an edge on the competition. Who can blame her? The point is, you gotta do what you gotta do, then explain it to your adoring public.

So here’s the explanation. Over the past couple of weeks, Sherri had a headache that wouldn’t quit. Its been one of those deals that many of us only rarely if ever experience, where you just try not to walk into a closed door while you circumnavigate the house. Ever had one of those? We hope not, but either way just sayin’ they get old after a few days. At first her headaches seemed like a return to a “normal” state where she’s endured periodic migraines over the years. Interestingly, and thankfully, Sherri’s migraines seemed to have subsided while she was on  chemotherapy; but they started to come back recently. There are certain side effects that occasionally occur with immunotherapy, like swelling of the pituitary gland, that can cause headaches. Wouldn’t you know it… An MRI just showed swelling of the pituitary, which on Tuesday won her a most-expenses-paid-by-insurance trip to the overnight ward at Fox Chase for a 24-hour steroid IV. Apparently when the pituitary gland presses on your brain, it hurts. I thought that gland just helped you spit out your toothpaste. Pitui. But apparently it’s the master mind of pretty much everything your body needs to be a stable biological system.

What we know about the situation at the moment is that it’s not unprecedented. Sherri may be able to remain on the immunotherapy trial if she chooses, but without the Ipilimumab antibody, which is the suspect for the pituitary problems. We’ve entered the “maintenance” mode of the immunotherapy treatment, so she’ll likely be getting a checkup every 4 weeks and a scan and vaccine every 8 weeks (next one in June) if everything remains stable. The pituitary thing might set us off schedule a couple of weeks though.

While we wait and see, please enjoy knowing that all your good work of advocacy, friendship, and participation are muchly appreciated!




Hello Friends. I guess you could say we’ve settled into a new routine so maybe that’s why we haven’t had urgent updates lately. As of Monday April 7, Sherri has completed four rounds of immunotherapy at Johns Hopkins. The symptoms left over from chemotherapy are getting milder, and overall this is a much better place than being a chemo patient. Each treatment brings fatigue, plus an immediate immune response with some fevers, local soreness and itching that seems to be settling down within a few days. It’s still not a routine you’d wish for, but it’s manageable.

Last week we had the first CT scan to monitor progress since the start of the immunotherapy regimen. The results were pretty much status quo – no substantial progress or backsliding. We’ll take it! The research doc was not surprised or worried about a stable result at this stage, and we are planning to stay the course with the trial for now. The first 4 treatments were spaced about 3 weeks apart, but now we go to a planned 8 week schedule with a checkup in between. Next on our Hopkins docket is a checkup in May and another scan and vaccine treatment in June. In the meantime, we’ll check in with the FCCC team and get some feedback on the reported observations from the last CT scan.  Hopefully having an 8 week rest period will also give Sherri some time to rebuild her hemoglobin levels to help fight the fatigue. Hopkins collects blood every visit for tests and to use in the trial research, and her hemoglobin has slowly declined.

We continue to be blessed with the outpouring of support for Sherri and our family. I know you all say you don’t need or expect thanks, and that you are happy to help out. But thank you!! As we progress through the steps we must take on this journey, having you walk with us really does shift the balance toward a more positive attitude and therefore a more positive outcome. Not to get all mushy and philosophical on you, but love makes the world go around and we are feeling us some love!

Thanks Bryn Athyn College Women’s Lacrosse for the Shooting for Sherri event April 17 at 4pm! Rock the Purple!