Well apparently it’s been a month since we’ve given you an update, so let’s catch up. We are figuring out the new norm on this immunotherapy trial at Johns Hopkins. Sherri has been through two rounds of the vaccine/ antibody treatment now. Because it’s all new we’ve had to monitor symptoms carefully to make sure any reaction is an immune response rather than a side-effect. Sometimes it’s hard to tell. The initial and expected symptoms were aches and fatigue akin to any good immune response to, say, the flu, and some pain and swelling at the vaccine sites. But when the fever flared back up late one evening a week later, we ended up on a little excursion to the ER. Everything checked out and the fever subsided on its own. As fate would have it, we came home at 3:30 AM in a raging snowstorm (Jeep, there is no substitute); but it’s a small price to pay for peace of mind.

So you know how you get an itch when you have a booboo that is healing? That’s what is happening with Sherri, except that she has a systemic booboo. Her boosted immune response (her booboo boost, if you will) means she itches all over and breaks out in little hives and rashes while the immune system goes to work. It is completely expected, irritating as all heck, and still better than chemo. I think our next event will be a pool tournament called “Scratching for Sherri.”

Following the second treatment on Feb 19, the pattern seems to be holding: fever, fatigue, itching, and swelling at the vaccine sites. She had a little shortness of breath this week, which is a known side effect that needs to be treated, so we made an appointment with our oncology team here are FCCC and they ordered a chest and lung CT scan to rule out inflammation. Again, all seems to be well. Interestingly, when she got the second vaccines applied there was a much more immediate reaction around the site than we witnessed during the first treatment. All this activity seems like a logical immune response, which is the point of this exercise!

Last Monday, Feb 24, we welcomed our good friend and professional musician Tom Rosenberg to town. Tom had the idea to perform a cello recital in support of Sherri, so we organized the event at Glencairn Museum. This free concert brought together our local community to raise awareness for cancer research and highlight some initiatives that are important to Sherri. Tom offered a CD for any donation, and the program included other opportunities to get involved. Photos from the event are available on the Bryn Athyn College facebook page.

Tom Rosenberg with Sherri and Dave at Glencairn cello recital

Sherri and Tom in 1975

This week marks the beginning of a new chapter in Sherri’s treatment, the suspension of chemotherapy and the first trial of immunotherapy. Didn’t quite start as planned, but came to the same conclusion a day later.

We dropped off the girls with friends and headed to my sister’s place in MD on Sunday night for our planned visit to Hopkins. Thanks y’all for integrating us foreigners with your families on a few school mornings. Despite being out of your normal routine, you made us all feel comfortable and welcome! Then we inched our way into downtown Baltimore for a biopsy on Monday morning. To make a long story short, they couldn’t find any liver tumors big enough to see on ultrasound so a dozen doctors, nurses, pathologists, and ultrasound techs twiddled away the morning with us. Any day you can avoid having someone stick a needle in your liver is a good day! The tumors apparently have continued to shrink substantially, and they didn’t need the biopsy to qualify for the study.

What they did need was blood parameters in range, and they didn’t get those either. Two pancreatic enzymes, amylase and lipase, were too high to qualify for the trial. So we had to scurry out to find a place to redo those two tests late Monday afternoon. When they got the results on Tuesday, both were back in range but it was too late to schedule the procedure so we stayed over and did it on Wednesday.

The clinical trial procedure involves 6 vaccine injections, plus an IV infusion of the antibody ipilimumab (see Ipi Ki-Yay). Apparently the reason purple is the official accessory color for pancreatic cancer is that they find many different ways to make parts of you turn purple. The vaccine treatments were fairly successful at that, and they warned us that a rash is one of the more certain side-effects. Nothing comes for free in this game! So far, though, most of the effects feel like anytime you get a fever due to your immune system fighting back!

Speaking of games, fights , and purple reminds me that the Bryn Athyn College men’s hockey team is hosting a Shooting for Sherri event at their home rink tonight at 8pm to continue to raise cancer awareness and express their support. Of course, the BAC hockey players are great sportsmen and would only ever fight for a good cause. Thanks men and fans – Rock the Purple!

Breaking news: Sherri has been accepted into this immunotherapy trial at Johns Hopkins, in the arm that receives a vaccine/ drug combination instead of her current chemotherapy treatment. We’ll be starting the trial on Jan 28, Sherri’s birthday. Let’s hope it will be a poetic re-birth day! (More info below)

There is perhaps a turning point coming into focus, but it’s a little bit renegade. Last Monday, Jan 13, we visited the Johns Hopkins Kimmel Cancer Center in Baltimore to meet with the team in charge of a clinical trial underway there. This is one of the immunotherapy trials that we’ve been keeping an eye on, and the time seems to be right for considering it now. The trial combines a pancreatic tumor vaccine with an antibody called ipilimumab (“ipi”) in a new test for effectiveness compared to FOLFIRINOX (the current chemo regimen that Sherri is on).

According to the research disclosure, the concept behind the trial is to boost the immune system using the vaccine in combination with ipi. The vaccine uses genetically altered pancreatic cancer cells to make a factor called GM-CSF that helps attract a person’s own immune cells to the vaccine site where they can become activated to help recognize and attack cancer cells. Ipi is used to block CTLA-4, which is a molecule that can shut down immune response to infection or cancer cells. An antibody to CTLA-4 can stop it from turning off an immune response, and may be able to boost the immune system against the cancer. Both the vaccine and ipi have been used with some success, but not yet tried in combination for pancreatic cancer.

Here comes the tricky part. The trial is randomized, so once enrolled Sherri would be selected for either the vaccine/ipi treatment or for continuation with FOLFIRINOX. If selected for the vaccine/ipi arm, there are substantial new risks and side-effects from both the vaccine and ipi. The FOLFIRINOX regimen is currently controlling and shrinking the tumors, which makes it difficult to make the decision to move on to something else. However, continuation of this chemo treatment will inevitably reach a point of diminishing returns where a different treatment would be required anyway. One advantage of moving to a new treatment now is that her own immune system would be stimulated while it is still healthy and to fight a cancer that is more or less under control. Going forward with this treatment would not preclude a return to chemotherapy, and in fact in some cases has made chemo more effective. Also it appears from our inquiries with UPenn that going down this path still leaves open the possibility to qualify for their upcoming immunotherapy clinical trial using CAR T-cells. So several of our immediate concerns have been addressed.

Sherri did the initial screening for the vaccine/ipi trial when we were at Hopkins on Monday. Some of her blood counts were slightly lower than required, so with the concurrence of her oncology team here at FCCC we decided to skip the chemo treatment last Thursday. After a short reprieve this week we’ll be back to FCCC on Thursday for another blood test to see if everything is rebounding as it should. All other requirements for the trial have been met and we’ll be making a decision soon, so we’ll keep you posted.

Thanks again to the Bryn Athyn College athletics programs and fans for raising awareness and funds for the Pancreatic Cancer Action Network! And thanks to everyone for your continued support at every level; physical, emotional and spiritual. We may get behind in keeping in touch with you all, but please know that your thoughts and prayers, messages and visits are all making a huge difference.

This week Bryn Athyn College will be hosting a hoops double header with a purple twist:

The BAC Athletic department warmly invites you to help bring awareness to a cause that is near and dear to its heart this season- our Shooting for Sherri night this Thursday 1/9, beginning at 6:00 pm. The Lions will battle it out against Penn State Brandywine in hopes to bring the college community together for a cause. Proceeds from donations, ticket sales, and money raised through the silent auction will go to the Pancreatic Cancer Action Network. The event is designed to increase pancreatic cancer awareness and show our support and care for the entire Cooper family-Sherri, Dave, Zia and Anji. We hope to see you there and wearing purple!

Thanks, Bryn Athyn College athletes, coaches, administration, faculty, staff, students, and community for this action and tribute! See the Support page for more details, and follow Bryn Athyn College Athletics on Facebook (www.facebook.com/brynathynathletics).

Rock the Red!

Approaching the end of the year, we tend to look back to see how it went. My tendency given the events of 2013: Don’t let the door of time hit you in the calendar ass on your way out! On the other hand, we’re still kicking some pancreas so we’ll call that a 2013 victory and make the best of it. We’d rather focus on what happens next.  Here are the latest outcomes: On Friday the 13^th, we tested folklore by scheduling Sherri’s endoscopy to replace a stent and take a peek inside. Despite being under general anesthesia, she came out of this procedure relatively alert and we were on our way back home at 10:30 AM. Maybe two 13’s on the same date (12/13/13) cancel each other out! Wednesday was the CT scan, and we are still “seeing the shrink” as the tumors continue to decrease in size and number. The main pancreatic tumor remains stable (which is good enough), while the liver shows fairly dramatic decreases and the lung spots are undetectable! By Thursday, Sherri was feeling good enough that they went ahead and gave her another dose of the poison cocktail. Some of the side effects are getting more pronounced as the chemo accumulates, but they are manageable and at this point the main concern is keeping an eye on declining blood counts (especially white cells that are dropping close to minimum levels). All in all, it’s been a positive couple of weeks.

Now it’s the first day of winter, yet there is a warming trend inside and out. We are celebrating the Christmas season, and with that time comes the opportunity to reconnect with friends and family and to reflect on the meaning of our lives together.  Thanks for hanging out with us this year and for all your support – it has made a huge difference. May we offer you our best wishes for a magical holiday season and a smooth transition out of the 13s and into the 14s!

Holiday Greetings from Sherri, Dave, Zia and Anji

As a parting “gift” for the year, here is a new Carol of the Bells lyric. Anyone want to add a few more?

Love from the Coops

—

Christmas is here!
Keep the list near
Wrap every gift
Kids need a lift

Wait are we done?
Nope, on the run
Lights would be great
Pull out the crate

Fire up a log
Serve up the nog
Prop up a tree
Come let me see

What have you made?
“Be not afraid”
Bells on the cat
Laugh about that

Spice on the stove
Guests just arove
Pie’s almost gone
Bowl games are on

Out for a hike
Trails that we like
Break from the grind
Recharge the mind

Stay up and watch
Ball dropped a notch
Shifting the gear
It’s a New Year!

Occasionally, inevitably you will have to take your vehicle to a mechanic. Same thing goes for the vehicle that carries your spirit around all the time — your Spirit Vehicle (SV), if you will. Sherri’s SV is getting some maintenance this week. Today the flow mechanic will be working on the filters with a little acupuncture. This seems to clear the pathways for removing toxins, and has really helped with some of the chemo symptoms. Thanks to good friends who are transporting her, and in a bold act of empathy, getting it done to themselves at the same time. Next, on Friday, Sherri will be back in the endoscopy suite at FCCC. Apparently it’s time to replace a pipe in the exhaust system so hopefully the mechanic has the Midas touch! This procedure is preventive maintenance on a temporary stent that was placed during the original diagnostic procedure last August (the warranty has expired, but mileage may vary). We have confidence in our mechanic, Dr. “Midnight” Tokar (he’s a jokar, though likely not a smokar…), but it’s never easy so please help me send Sherri some extra thoughts and prayers to give her SV a lift!

Next week is the diagnostics and troubleshooting phase where we get a look at the overall system health. With 8 chemo treatments under her belt, Sherri’s fuel systems are still working reasonably well but she would probably tell you that the horsepower at the wheels seems a little low. We’ll keep you posted on what that looks like after we get a look under the hood.

There are a few things in life that can make you feel like royalty: great friends, a purple bathrobe, a gimungous house at the beach…

We got a little break from the mundane and a taste of the kingdom recently when some wise yet uninhibited friends from Sherri’s days at Duke Marine Lab scored a big weekend rental on the waterfront in Ocean City and converged on it for an impromptu reunion. The timing worked out that we needed to move Sherri’s chemo schedule around so this was a bonus weekend in so many ways – feeling above average and taking the opportunity to get away for a bit. Thanks Chris, Neil, Jayne, Moses, Elise, Bear, Esther, Bucky & Deb for that gift!

Too soon, though, we are back in realityville and visiting oncologists and infusion rooms. We’ve found out some interesting developments on the clinical trial front this week. On Tuesday, we met with our doc at UPenn to check in on a promising immunotherapy clinical trial that we are keeping an eye on. Dr T recommended that we postpone entry into the program where we had been penciled in for January. The treatment causes quite a bit of drama in the immune system, so they are proceeding cautiously and only taking one patient at a time. They are starting with people who have failed responses to a standard chemotherapy treatment, and fortunately we are not there yet. So we are now looking at a more realistic timeline later in 2014.

In the meantime, our FCCC docs have identified another potential clinical trial that could be relevant to Sherri’s case. This trial uses a pancreatic cancer vaccine developed at Johns Hopkins. From the hopkinsmedicine.org website: “This is a Phase 2, Randomized, Multicenter, Open-Label Study of the Efficacy and Immune Response of the Sequential Administration of GVAX Pancreas Vaccine (with Cyclophosphamide) Alone or Followed by CRS-207 in Adults with Metastatic Pancreatic Adenocarcinoma” aka, “Plan B.” Always good to have a Plan B in the works – keep them coming scientists!

Thursday was infusion day, and we are back on a two-week cycle. The plan is to do another session on Dec 5.  It’s also time to replace the temporary stent from the initial diagnostic surgery back in Aug, so we have another outpatient endoscopic procedure scheduled for Dec 13. Then on Dec 18 it will be time for a follow-up CAT scan to see how things are progressing. Most likely we’ll resume the chemo treatments on Dec 19. Busy month.

We continue to be in awe of the constant outpouring of support, with meals still showing up at our door with a smile and a nod, friends calling to get Sherri out for a walk, company at appointments, a ride for our stranded children, the reassurance of daily thoughts and prayers coming our way, people stopping by to philosophize on the purpose of the universe, you name it. Thanks y’all.

The native grasses are restless [Oct 27, 2013]

1. The chemo is taking a toll on Sherri’s blood counts; not unexpected, but reaching the edges of normal limits.
2. Results are back on the genetic profiling of the pancreatic tumors, with several interesting mutations detected.

Blood Counts: A typical chemo regimen is designed to put misbehaving cells in the cell block, but they say collateral damage of up to 20% in certain good-cell neighborhoods is inevitable.  So let me get this straight; cancer’s law enforcement accidentally puts 20% of your upstanding citizens in the slammer, and that’s normal? That would be like the Cancer Congress just arbitrarily furloughing another 20% of the essential workforce every two weeks. Oh, yeah.

So to be more specific, Sherri’s white blood counts are at the lower limit; hemoglobin, hematocrit, and platelets are below normal ranges; and red blood count is low. No surprise (that’s why they check it every time) and it’s not critical quite yet, but we’re trending toward shaky ground. So we’ll need to make a few changes. First up: skip an extra week before the next treatment.

Genomic Alterations: I was just thinking the other day: what if the excessive proliferation and tumor formation was due to the amplification or overexpression of ERBB2? Clearly a mutation in the kinase domain of ERBB2, such as in ERBB2 L755S, could be an activating mutation capable of inducing oncogenic transformation in cell cultures. Well it turns out I was right! And not only that, but it turns out she has the ERBB2 R678Q missense mutation within the cytoplasmic domain of the HER2 protein, in the region of the nuclear localization signal and the region required for interaction with KPNB1 and EEA1… I’m thinking that would be in the region of amino acids 676 to 689-ish… I kid you not! (well, no that’s a lie. I got it from the report. See below.)

There is quite a bit more of this in a 17 page report from Foundation Medicine, who conducted their FoundationOne™ screening. In fact, they detected several genomic alterations that have FDA-approved therapies in use for other (non-pancreatic) tumor types, and identified a number of clinical trials underway that apply them to pancreatic. All you biotech gurus, medical researchers and practitioners, and extremely advanced hobbyists that we are proud to call our friends, let me know if you want to see this report and I’ll email you a copy!

We are happy to have this information. Our village will find something useful to do with it!

Next Steps: We’ve moved the next chemo trickle charge to a different date. We are waiting three weeks instead of two, so the next infusion will be on Nov 21. Our hope is that this will give Sherri’s system a little extra time to boost those platelets back up (unless someone can bring us a wheel barrow of real marrow, and say it 5 times, quickly…). Also this change will reset our normal two-week cycle to be out of sync with Thanksgiving and Christmas, when we will likely be trying to venture out a bit.

In the meantime, let’s all set our clocks back at different times this weekend just to keep things interesting.

The Genetics Risk Assessment Program (RAP) Rap:

Met with the team in clinical genetics

Identified the genes using nothing but phonetics

Ask me to name them and it will be pathetic | you’ll regret it | don’t go there just forget it.

 

There’s no silver-bullet story, yo

We’ll tell you ’bout the glory, tho’

No mystery in the history | no  family-tree story | not to worry

 

Not passed down through the generations

Gotta find the configurations

Of the gene mutations | with the formation | for annihilation

Or in less artistic language, we received the results of Sherri’s genetic profile this week, and they were relatively inconclusive. There were no gene mutations identified that have any known correlation with cancer. This is good in that there is no indication that family members might share a predisposition to the cancers that Sherri has contracted. On the other hand, it doesn’t give us any additional actionable information to work with.

Still pending is additional profiling of the tumor cells for useful genetic information, but this is a separate process.

Meanwhile, we are back at FCCC for cocktails.

Live from Fox Chase Cancer Center.

Today we received results of yesterday’s CAT scan to follow up on Sherri’s progress after 3 chemo treatments. It’s pretty good news, folks.  To cut to the chase, the report summary says:

IMPRESSION:

1. Decrease in size of multiple hepatic metastases.

2. Decrease in size or resolution of small pulmonary metastases.

3. Apparent increase in size of pancreatic head mass may be due to technical differences.

4. Decrease in size of portacaval lymph node consistent with treatment effect for metastatic disease.

The interpreting radiologist’s name is Dr. Milestone. Poetic, ain’t it?

Here is our understanding of what this means. The tumors on Sherri’s liver have decreased by about one third (and to my eye, the biggest one has dramatically reduced). The small tumors that were apparent on her lungs are all but undetectable – only a few can be found, and they are smaller than before. The pancreatic mass seems slightly larger, but the docs are skeptical of this appearance because the original CAT scan used a different technique that didn’t provide as accurate a measurement in this region. Also reduction in the liver normally follows reduction in the pancreas. Finally, the lymph node that was assumed to contain cancer cells due to inflammation is also shrinking. Nothing new is showing up in other organs.  For comparison, during the month prior to the first scan, one of the liver masses almost doubled in size.

Our oncology team is very pleased with this result, and one of them dubbed this an “amazing” result for only 3 treatments. Not really all that surprising given the blast of cosmic pancreas-kicking prayer vibes you’ve all been sending. Way to go people! Keep those amazing results coming!

So we”ll stay the course for now and continue to work toward a complete smack-down of this nuisance. Infusion number 4 is underway.