Gene Genie

Well shiver me timbers, yesterday was another big day at Fox Chase and it’s already been, like, 12 days since I posted an update! So let’s catch you up on the last couple of weeks and preview what’s next.

In the “So How Are You???” department, the answer continues to be somewhat of a moving target. Sherri has again experienced most of the main predicted side effects since her previous treatment, but she seemed to space them out pretty evenly. That’s good in that she generally was only dealing with one at a time, but on the other hand she ended up with only one symptom-free day left before yesterday’s return to the infusion lab. The docs continue to tweak the doses a smidge (their term, not mine!) each session to try to find a balance. Sherri is already famous over there at FCCC for the facial twitching reaction that is rare enough that some of the veteran oncology nurses have never seen it–not that anyone particularly aspires to have a chemo side effect named after them. This mischief is mostly managed now, but the twitch continues to manifest ever so slightly at seemly random times during the infusions; must be channeling her inner bunny rabbit. The cold sensitivity effect has come on much more prominently these last two times. Sherri drank some ice water after her previous treatment and exclaimed, “That felt like swallowing broken glass. I won’t be doing that again anytime soon.”  She also gets a prickling sensation in her fingers that lasts for some time after she touches something cold. Last time that went away after a few days, but it seems to be cumulative so we might have to clip some gloves to the fridge. The rest of it is pretty much about trying to feel up to doing the things she knows she is supposed to do, like eating.

We continue to get positive signs about Sherri’s overall health. “Dag nabbit, you don’t look sick!” they all say (paraphrasing). Her blood tests show recovery between treatments, so she is bouncing back after each blast. She is keeping her weight steady, which indicates that the nutrition is getting through the fog. Thanks food angels!

In the “What’s Next???” department, we also have some interesting developments. Last week we met with the Clinical Genetics specialists at FCCC to participate in their Risk Assessment Program (RAP). We were referred here based on the fact that certain gene mutations are associated with both breast and pancreatic cancer (yup, had ’em both). This is a new and evolving field that needs our help to save lives. Basically (and basic is all you will get out of me on this subject), there are gene mutations (“typos” in your DNA) that are associated with the diseases and disorders we conjure up. We also have other genes that identify and fix these typos (your “proof reader” genes). But the proof readers are also fallible, so when they get a mutation, they don’t catch the typos correctly and bad copy gets past the editor. That’s just the way life is. The RAP is designed to identify key genes that could be associated with cancer incidents in one way or another. At this point, though, more known cases are needed to help make the associations accurately. Our hope is that associations to pancreatic cancer will continue to be made so that additional and more effective treatments can be designed.

Apparently this type of research is taking off for a variety of reasons, so it turns out that Sherri is a candidate to get a panel of 25 genes tested and analyzed. Because genes are passed around among relatives (i.e., inherited), it’s really important to know about family history to make the most of what they find in the sequences. (Note that they can also, in some cases, use this info to predict risk to other family members if said family members want to know…) So Sherri has been learning more about all her grand aunts and great uncles and creating a really wide family tree.

Lastly, we both want to let you all know that in less than two weeks, just prior to her next scheduled treatment, Sherri will be getting a CT scan checkup to gauge the progress of this chemo regimen called FOLFIRINOX. Just to manage expectations, we’ll tell you that even though this is the best known treatment for pancreatic, it is effective less than 50% of the time. Now granted, Sherri is above average in every way, but nonetheless this is why we need all these B plans along with your prayers, good vibes, love, mental telepathy, and pancreas kicking cosmic energy!



Friends in High Places

Hello everyone. We are now into the second round of chemotherapy treatment, and also in the second round of our crash course in pancreatic cancer mechanisms and research. We’ve been hearing from friends and colleagues around the country who have experience and perspectives on the medical and biotechnology side of this equation, and we are encouraged by the strong commitment of our oncology team to follow up on an expanding set of options and questions that we bring to the table. We also want to acknowledge the importance of our emotional and spiritual support network. We soak it all in because positive action affects positive change, and change happens at the interrelated levels of body, mind, and soul.

Our friends in biotech and medical research are optimistic about the potential of immunotherapy for cancer treatment, and now we are too! There are active clinical trials applying these principles to treatment of pancreatic cancer. We’ve been referred to experts at Duke and Penn who agree with FCCC that the initial FOLFIRINOX treatment Sherri is currently receiving is the best known, and an important first step in her overall regimen. As of last Wed, she is lined up for a possible next step: a clinical trial that may be coming on line in January (a “CAR T cell” immunotherapy treatment) being conducted by UPenn and Johns Hopkins. Sherri will also have a genetic assessment for BRCA 1/2 starting next Thu at Fox Chase because this gene mutation has been implicated in pancreatic and breast cancers. If it is present, this knowledge could open up other treatment options. Genetic testing is an important factor in understanding the mechanisms at work in each individual. We are also learning more about direct genetic profiling of the cancer cells so we’ll see what that will require as well.

We continue to find that diet and exercise are important factors in maintaining one’s mojo when one is slamming biweekly chemo cocktails. (We hope you will all take our word for this – do the diet and exercise part but trust us, there are better cocktails out there!)  On both counts, we continue to be utterly in awe of the community response that is keeping us nourished and getting us out of the house to walk in the park. Don’t you people have anything better to do than to think up ways to help us all day long? Apparently not. We’d also like to shout out to our professional colleagues at Bryn Athyn College, Digital Wave, and Antech Systems, all of whom are covering for us hugely as we navigate the appointment calendar to figure all this out. Wow.

On a more ethereal note, you may have noticed that we find the simple act of projecting forward to a positive outcome for this situation to be really important to our immediate well-being as well as the long term view. Sherri’s fan club keeps saying “you can do this!” and it really resonates; it does make a difference. We are also part of a spiritual network that feeds the soul, and heals from the inside. We feel your prayers, and believe that we are part of a system that delivers benefits both to those who are prayed for and for those who pray. Sherri has always been and continues to be very much in tune with this, and we know that it is inexhaustible.

With all this in mind, here is a recent picture from one of our walks around the tri-castle area here in the Bryn Athyn historic district where we live. We want you to know that while this episode in our lives may be partially a science experiment and partially a leap of faith, she’s Still Sherri.

IMG_20130907_112856_570Sherri sporting the latest in jugular-tap fashion,
out walking with her trickle charger.



Roller Coaster

If you are one of those people who abhor roller coasters (like me), you’ll get what I mean. The ups and downs are not that much fun, really. We’ve seen most of the effects predicted for the first chemo treatment now (with some unexpected), and it’s hard not to dread what it will feel like when we get slung around the next blind corner. Note to chemo: you’ve been on all the rides now, so let’s settle down for a nice cold drink and watch the fireworks!

One thing that really seems to help is getting up and out for some fresh air and steady exercise. Not always at the top of your to-do list when you are not feeling good, but in Sherri’s case getting out and walking for a few miles on her favorite trails in the Pennypack Trust seems to get the system charged up for action. We’ve had a few breakthroughs after a long walk, though we’ve found limits on that too (maybe some days are meant just for rest).

Sherri has made an effort, generally with success, to be present for the girls as they prepare for school each morning and often in the evenings too. She’s made breakfast, packed lunches, braided hair, and does their homework when they can pay her (OK, she’s a teacher, so of course the girls get only appropriate guidance…). Sherri gracefully accepts household chores whenever she is able, because they are the great normalizer. Pacing herself is the name of the game.

Next up: Meeting on Wednesday with another oncologist referred by Sherri’s GI specialist at UPenn. Then the next chemo infusion on Thursday.

We’ve appreciated all your hopeful, helpful, tactful, physical, emotional, and spiritual support. Our love to all. Thank you!