About My Diagnosis

Warning: This page includes information about my initial prognosis. If you don't want to read it, don't. I won't be offended. It also includes updates as my treatment continues.

At age 35, on a beautiful summer day in 2013, the doctor who had done my endoscope two days before called me in for a follow up, two weeks earlier than scheduled. The day of the endoscope, he had said he'd found what looked like a partially healed ulcer and that the lining of my stomach was inflamed. For about three months before this, I'd been full after only a few bites of food (early satiation), slightly nauseous, and had subsequently lost 20 pounds. The doctor quickly told my husband and I that the biopsies had shown stomach cancer cells.

He scheduled me for blood work the next morning, a Friday, and a CT scan on Monday. Monday afternoon, my primary care physician called me in for the results. We brought my best friend with us. My primary care explained that there were inflamed lymph nodes in my abdomen and one near my clavicle, as well as some suspicious spots on my liver. She had already begun the referral process for me to one of the top 5 cancer institutes in the country, two hours from home. The next day I went to work, told my colleagues, and spent half the day on the phone arranging appointments.

The next week was filled with appointments. The first one was pretty awful. My husband and best friend accompanied me to meet with my primary oncologist and an oncology fellow. They explained that the inflamed lymph node near my clavicle is where stomach cancer likes to go when it spreads. Assuming this was true in my case (which a biopsy a few days later would confirm), I had stage IV stomach (or gastric) cancer, and therefore, surgery was not an option. Shock set in. They explained that chemotherapy would be the treatment of choice and I would be eligible for some promising trial drugs. I quietly asked if this was chemotherapy to cure cancer, or chemotherapy to live with cancer. They answered, to live with cancer. Again, I quietly asked, "For how long?"  They answered, "Months to years, but not decades".  The good news that came out of this appointment was that the world class radiologists were not worried about the suspicious spots on my liver. The rest of the appointment, frankly, sucked.

It has been eight months since I was given that initial diagnosis. I'm responding better than to be expected to treatment, and therefore, I'm erasing the "months" part from that prognosis and focusing on years to decades instead.

Update May 2014: My most recent scan last week showed no change; everything is stable. For those of you unfamiliar with stage IV, this is the best we can hope for. However, when you consider that my last scan showed the lymph nodes are "normal"  and really can't shrink anymore and they can't measure the diffuse cancer in my stomach lining, this really is excellent news. Even more excellent news would be, this is all over and you can have your old life back, but neither of my doctors is named Dumbledore, so this didn't happen. The plan from here is to just keep chugging along, same treatments, every two weeks.

Update June/July2014: My most recent scan showed great results. The lymph nodes remain stable. More excitingly, the usual wording on the report is "continued thickening of stomach lining", but this time it read "perceived thinning of stomach lining". This is something we were led to believe wouldn't/ couldn't happen. Since the stomach lining is so difficult to measure, this also seems to imply that the cancer there is significantly reduced.
I've started acupuncture. My hope for this was that it would help relieve the neuropathy in my hands and toes. After the first treatment I experienced a dramatic decrease of the discomfort I've had in my leg since a blood clot was found there eight months ago. This was an unexpected, but welcome benefit. After my second treatment, I noticed a small decrease in the neuropathy in my toes.  Acupuncture is alcohol extremely relaxing.

Update January 2015: It's been a long time since I updated this blog and the details of my treatment and a lot has happened.  At the end of the summer I took a six week break from treatment.  I was feeling very fatigued and the break enabled me to feel like myself and resume my normal activities.  In September, just before I was to resume treatment, a strange swelling occurred near my left shoulder.  This turned out to be the new involvement of lymph nodes in the supraclavicular area.  It was a small progression, but a progression none the less and therefore my prior treatment was no longer working.
I began a new clinical trial of a drug called Cabazitaxel.  I had few side effects.  After six weeks, a scan showed that the lymph nodes had shrunk a small amount.  Normally no one would suggest changing treatment plans when the current one is working, but my doctor presented me with an opportunity to participate in an immunotherapy trial of two drugs, Ipilimumab and Nivolumab.  These drugs have shown really exciting results in people with melanoma and are now being tried in other forms of cancer.  In melanoma, about thirty percent of people respond and of those thirty percent about two thirds have extended periods of regression and/or no cancer growth.  And these are people who would normally be given six months to live and instead are two to three years post treatment.
After two immunotherapy infusions, I developed complications which necessitated leaving the trial.  First, a few days before Christmas, I developed pneumonitis, as my immune system attacked my lungs.  Then, a week after New Year's, I developed pancreatitis, as my immune system attacked my pancreas.  Over a twenty day period, I spent ten days in the hospital and am still on high doses of steroids to treat these complications.  As frustrating as it was to leave the trial, the most infusions that anyone receives of Ipilimumab is four and I received two.  And among people who had to stop the drug due to complications even after only two or three treatments, many still had prolonged periods of no cancer growth.  there is also a theory that people who develop these strong immune reactions like me, are more likely to experience remission as result of the drug, so there's still hope.