In an effort to do a better job of keeping all of you up to date on Emily’s treatment, I’ve made some changes to the site. I’ve scaled it down to just two pages:
- About Us – You’ll find our story and ways you can get involved if you so choose to.
- Blog – I’ll try to give regular updates here to keep everyone up to speed on where we are and where we are going.
You may or may not be aware that the trial Emily took part in earlier this summer did not work as we hoped. So, we crossed that option off the list and moved on to the next. We are now working with a team of doctors in MD Anderson’s Department of Investigational Cancer Therapeutics. This is the latest and greatest in treatment options, though they are typically phase 1, meaning therapies that are being tested on humans for the first time.
We met with doctors from this team towards the end of August to make plans for Emily’s upcoming treatments. There are currently two options that Emily qualifies for based on her particular kind of cancer and where we are in her treatment history.
To start, the team is doing extensive molecular testing on samples taken during Emily’s surgery in 2012. From this, they hope to gain a greater understanding of exactly what kind of mutation we are dealing with so that a customized treatment option can be recommended. Cancer can be confusing and the way we talk about it doesn’t really help. While cancer does start in a particular area of the body, classifying it that way is only one small piece of the puzzle (i.e., ovarian, lung, pancreatic, etc.) The reality is that every single person’s cancer is different from the next because it is related to your genetics. Whereas when you deal with something like the flu, the same prescription typically works for everyone because it is the same virus; there is no one size fits all for cancer.
While Emily’s sample is tested, she started a different phase 1 trial on September 8, using a drug called SOR-C13. This drug is derived from the poisonous saliva of the northern short-tailed shrew, native to Canada and some locations in the northern U.S. Researchers in Canada have found that a particular agent in the saliva of the shrew blocks calcium from entering cancerous cells, which causes their death. That’s the theory anyway, and they’ve had a lot of success in the lab.
The good thing about this treatment, aside from it possibly working, is that it comes with few side effects. For the most part, Emily has only experienced mild sporadic nausea. The bad thing is that because this is a phase 1 trial, administration of the treatment means a lot of observation. Each “cycle” of the treatment is 21 days long. Emily goes in for treatment on days 1, 2, 3, 8, 9 and 10. After day 10, she gets 11 days off before starting the next cycle. Each of the six days that she is there for treatment is usually close to an 8 hour day. It starts with blood work around 7 a.m., and then she has to wait there for the results to come in. If all is well, she is admitted to her treatment room, where nurses “access” her port and a vein in her arm. The port is a semi-permanent, surgically implanted device just under her collar bone. Long story short, she gets needles stuck in her arm and chest. Once accessed, Emily is given a drip of Benadryl. This makes her pretty groggy for a few hours, though sleep isn’t possible as medical staff are in and out all day. After the Benadryl, Emily gets the SOR-C13, which we affectionately refer to as “Rat Spit.” This drips into the port for about 90 minutes. Once it is finished, Emily has to stay for observation for 4-5 hours. During this time, Emily undergoes multiple EKGs, blood draws and monitoring of vital signs. After starting at 7 a.m., the earliest she has been allowed to leave thus far is 5:30 p.m. As you can imagine, this makes for a very long day and neither of us feel like doing much of anything by the time we get home. There’s really only time to eat something, clean up, pack for the next day’s adventure and sack out to get enough sleep before the alarm at 5:45.
Here’s a time lapse of our morning commute, so you can get a little taste of the fun.
Fortunately, Emily is able to work from her room between getting poked, prodded and drugged. She can VPN to her work computer at Avondale House and is in constant contact with her co-workers through the beauty of smart phones. I’m also able to visit every day as Rice University is just a few blocks away. We have free shuttles that take students into the medical center, so I hop that to see her around lunch time.
We won’t know exactly how well the drug is working (if at all) until Emily has a scan at the end of October. There are a few visible symptoms that we’ve noticed since she started this treatment and our doctor believes it is directly related, so we at least know that it’s doing something, and we are hopeful that it’s something good.
That’s it for this update. I’ll do my best to add regular posts, so check back often and please feel free to leave encouraging comments for Emily. And, as always, if you are interested in helping in other ways, you can check out the bottom portion of the About Us page for opportunities.