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KRAS, ALK, EGFR … WTF?
21 NovSince genetic mutations can often occur with adenocarcinoma, Chip’s test results were sent to The Mayo Clinic for further analysis. The oncologists had both laid out similar treatment plans for us based on various scenarios–intravenous chemo if there were no mutations at all, approved drugs if it were this particular mutation, what clinical trial was available if it were this mutation and if it happened to be the KRAS mutation, well, that was just not going to be good at all. At this time, Chip is not eligible for radiation or surgery, because the cancerous tumors are widespread throughout his abdomen.
After several long days, the results finally came back, and it turns out Chip has a genetic cell mutation which affects 2% of adenocarcinoma victims called ALK translocation. It’s all relative these days, but we were ecstatic with this news, because both oncologists had said there was an approved and effective drug called Crizotinib or Xalkori to treat this particular mutation. 2%. I always knew Chip was special.
We were desperate to start treatment, so we were elated when Dr. B, the oncologist at Johns Hopkins University, e-mailed us over the weekend, the day of Joe’s 3rd birthday party, indicating how great this news of the ALK mutation was. She was going ahead and submitting the prescription to the pharmacist so the authorization process with our insurance company could begin, and asked us to come in to see her in a couple of days for blood work and an EKG and to pick up the prescription. Hallelujah! The ball was once again in motion. In the meantime, the tumor in Chip’s eye was starting to cause him significant pain and he had undergone his first of what will be monthly bone strengthening infusions, which ended up making him quite ill for a couple of days.
It’s game on now, cancer!
On Thursday, November 15th, after spending another full day at Hopkins, Chip popped his first pill at home that evening. Just for good measure, we decided to celebrate by washing it down with a shot of Pappy Van Winkle’s. Within hours, he was throwing up, and it was another long, long night in the Kennett household, but Chip is slowly adjusting to the medication. The pain in his eye has fully subsided, so we are hopeful this means his body is responding to the treatment.
Xalkori is considered to be a “smart” drug. Intravenous chemo poisons all cells–healthy and unhealthy ones. Smart drugs only target the cancerous cells. They basically open the receptors or “doors” to the diseased cells, and allow the poison to travel in and eat the cancer.
Chip takes his medication at 8:30 AM and PM each day. Every single time, I visualize those little doors opening up, the poison traveling in and EATing the cancer. Eating it all up. Isn’t that just the best visual??
– Sheila
Shit Sandwich
26 Oct
I know what to do when life hands you lemons, but when it hands you a big ol’ shit sandwich? Well, that’s another story.
On October 26, 2012, our lives were changed forever. A few weeks before that, Chip started to notice a “floater” in his right eye towards the end of the day. Since it had been several years since his last eye exam, I suggested he schedule an appointment. When the optomotrist dilated his eyes, she thought she detected his retina becoming detached so she immediately sent him to a retina specialist to have it repaired. Later that afternoon, the retina specialist said that was not the case but confirmed there was a “spot” on his eye. The following business day, he saw another retina specialist who identified the spot as what he thought looked like a melanoma, but since it’s dangerous to perform a biopsy on the retina and since cancer rarely starts in the eye, he sent Chip to our general practitioner for further testing.
A couple of days later, Chip met with our mutual and beloved doctor where she conducted a complete physical exam. Everything appeared to be perfectly normal and Chip was feeling just fine. As a matter of fact, about five weeks prior, Chip had just competed in his second Tough Mudder of the year. But just to be safe, she sent him to the hospital for some lab work and wrote a Rx for an MRI and full body PET scan. The following week, Chip had all of these tests performed and a couple of days later, Dr. D. called and asked us both to come in. The first question she asked me was how far along I was. I responded with 35 weeks, and I remember her being relieved I was as far along as I was, which soon made sense. Sort of.
Dr. D. told us the MRI came back all clean, but the PET scan was “all lit up.” Cancerous cells appear as pink and orange spots on the scan, and Chip had cancerours cells in both of his lungs, liver, lymph nodes, and bones plus his right eye. I was in shock. I was hearing the words come out of her mouth, but was she really telling us that my 31-year-old husband and father of my babies had Stage IV cancer all over his body? I just kept saying “What? What?” over and over again. Chip grabbed my hand, looked me dead in the eye and told me with all the confidence in the world, “We’ve got this.” So, those are the words I chose to hold on to from that day instead. We’ve got this. We’ve GOT this.
So, what do you do when life unexpectedly hands you a shit sandwich? Well, we chose to go to the zoo.
– Sheila
Team Kennett 