Esophageal Cancer Journey a 2 year journey
I think many of us forget that cancer is your own body going awry. We tend to think of cancer as an unwanted invader like a virus however it is more like an autoimmune disease where your body destroys itself.
Our journey began one evening when my super healthy 63-year-old husband got up from the dining table and went to the kitchen sink to throw up. I thought he was choking and became quite alarmed. He wasn’t choking he was trying to remove something caught in his throat (broccoli if my memory is correct). After he was successful he sat back down. Being very worried I started a conversation with him where he explained how some foods mainly bread seemed to be getting stuck on and off since around January. It was now May.
Alarm bells started firing in my head. I remembered a case similar in my old floor nursing days 15 years earlier when a man came in with a similar problem. He was discharged and died shortly after. I started voraciously googling and reading articles, crying, and began to panic that he had esophageal cancer. He had no risk factors except possibly too much weight. No history of reflux. Esophageal Cancer statistics are horrifying even when caught early.
He had been thrilled about his recent weight loss without working at it – I told him to call his internist and get seen. They ordered barium swallow, which showed some narrowing in his distal esophagus (near the stomach). Next we were off to the gastroenterologist for a scope. Meanwhile this all took time – weeks and he was able to eat less and less…by the time of his scope liquids only.
We went to have the scope and the gastroenterologist called me back to his office after the procedure. He said, “I can’t pass the scope he is too narrow. He will have to go see someone in Baltimore”. Later that week we were in Baltimore getting a stent and having a very necrotic appearing tumor in his GE junction biopsied. Our oldest daughter was with me and the gastroenterologist told us he had to wait for the pathology but in his judgment it was cancer of the esophagus. We waited for George to wake up. We drove home. The gastroenterologist told us since he was so healthy and young he should probably get aggressive chemo to prolong his life
The next three weeks we had trouble thinking and breathing. Our precious time was jammed full of doctors’ appointments, procedures, and tests. George had a port placed for chemotherapy. He had a CT scan, which told us he was stage 4 with metastasis to the liver and lungs. Another devastating blow – however by now I had already read how terrible the statistics are no matter your stage with this cancer. We had consults at major cancer center. Ultimately we were informed the first line esophageal cancer treatment is the same no matter where you go. We chose to stay local. He had a MUGA scan to make sure his heart was ok for specific chemotherapy. We consulted an endocrinologist to monitor his sugars during chemo. George had type II diabetes diagnosed several years earlier. During this entire time he was attempting to eat as much as possible. The stent causes the sphincter at the top of the stomach to no longer close so there is tons of indigestion and pain suffered due to the tumor. So added pain medications, bowel medications, GI meds, cardiac meds, diabetes meds, and sleep medication
The local oncologist put George on modified DCF, which is docetaxol, cisplatin and 5FU. Every other week on Wednesday we went to the infusion center and he received docetaxol then on Wednesday afternoon home health met us at our home and hooked up the 5FU which would run until Friday when we returned to the infusion center to get cisplatin. There were extra drugs and fluids hung so George would not have some of the chemo side effects and drugs to take at home to continue to minimize side effects. George essentially slept each weekend after treatment.
At the beginning of this journey his weight was around 220 lbs. and he weighed 180 lbs. by the time treatment commenced. We constantly addressed nutrition. We learned to make high protein shakes to help. George was a non-insulin diabetic but with treatment became an insulin dependent diabetic.
George worked throughout his treatment – partly because this was a part of his identity and this kept his mind active and off the fact he had a terminal cancer.
Every other Wednesday the infusion center drew bloods to monitor how George’s body was handling the treatment. By the 7/8 treatments his blood counts were bad and his oncologist would not allow more treatment until his blood counts improved. George was begging for a break anyhow…. the doctor decided to order a CT scan. George had a complete response to treatment… and his stent had fallen into his stomach. We learned this often happens with the stents and we scheduled a scope to remove the stent and they took biopsies. Results were no Evidence of Cancer and CT scan was clear. We were cautiously elated…
At this point we returned to Johns Hopkins and consulted again. The suggestion was to start Xeloda the oral equivalent to 5fu. George started the drug and was cancer free until June 2016. The cancer had returned in the GE junction and no where else. He knew because he had trouble swallowing once again. Back to Baltimore and a second stent was placed. Discussions were had at this time about surgery. Consulted with a thoracic surgeon at Hopkins. The surgery is an intense (all day with many possible complications including difficulty with eating after) and the vagus nerve gets cut. The surgeon had told us he had done 6 esophagectomies on stage 4 patients and 5/6 had reoccurrences.
While George contemplated whether or not he was interested in the surgery they started prepping him. Carbotaxol and radiation to the esophagus. He had 28 radiation treatments. After 2 weeks of radiation eating became painful a problem once again and he eventually got down to 156 lbs. After the treatment had finished and the Pet Scan determined he was cancer free he decided the surgery would not happen. He received a radiation boost at this time.
We made it until Thanksgiving without an issue and sitting down to eat he once again got something stuck, We went to the ER and he had a scope and the food removed. Follow up appointments were scheduled.
Another CT was performed and the cancer had returned to the liver and lung the esophagus looked ok but required dilatation. At this time we were actively pursuing a trial involving immunotherapy at Hopkins. Getting into these clinical trials was taking quite a bit of time that we didn’t have.
While awaiting the trials George hit his head on a cabinet at home. He subsequently developed a goose egg. The local oncologist didn’t think it was cancer but suggested he see his internal medicine doctor and get an x-ray. Turns out it was a lytic lesion so our next stop was an MRI.
The MRI showed us it needed to come out. The lesion had destroyed his skull and was expanding. We next visited a neurosurgeon and a craniotomy was scheduled. The MRI showed no mets to the brain, which relieved us. With the head mass came unrelenting back pain – so the oncologist wanted George to see pain management when he was in the hospital for his craniotomy
George was now spending much of his day in bed – knocked out from pain meds. He awoke late in the day Wednesday April 19, 2017 before his scheduled Monday craniotomy surgery with right-sided weakness in both his arm and leg. I evaluated and felt it was the result of lying in bed all day. When we went for a walk later that evening I realized this was something more – his gait was off. At 10:30 pm we headed to the emergency room.
At the ER they decided to admit him for multiple reasons. Uncontrolled Back pain, elevated troponin (cardiac) levels, and stroke like symptoms. It was determined he had had multiple watershed strokes. Fortunately his deficits had cleared by the next day. We were then faced with the decision of surgery (craniotomy) or not and could cardiology clear him because of the strokes. Gastroenterology would not sign off on a blind trans-esophageal study of the heart. Cardiology was hypothesizing the stroke came from vegetation around the heart. The lytic skull mass was growing and taking space so the decision was made by us understanding there were again stroke risks. Throughout this journey we were faced with making decisions like this where we had to choose the lesser of two evils.
The surgery (craniotomy) was performed and the surgeon told us they removed most of the mass. They could not get it all because part of it lay in the major blood supply to the brain. UGH. He had more strokes while undergoing surgery and these deficits lasted longer. He spent many days in ICU where his blood pressure was raised to perfuse his brain so the stroke areas could get enough blood.
After being transferred to the floor he had to return to surgery and have the titanium mesh removed because of a hospital acquired staph infection. Severe uncontrolled back pain continued to be an issue the entire hospital stay. All the heavy hitters morphine, dilauded, oxycodone, fentanyl were used without success. Finally methadone helped and he was discharged. A neurologist theorized the upper back pain was a result of the skull tumor interfering with the meninges.
We learned the pathology of the tumor from the oncologist. This was squamous and not adenocarcinoma like the first biopsy……. But still esophageal. Theory being the original must have been of mixed type but the small biopsy didn’t show this. However the strokes and the two cell types excluded him from all the clinical trials.
George was discharged after 21 days in the hospital. He now wore pull-ups routinely. He needed assistance to get from his bed to a recliner, and with all activities of daily living. I slept in the recliner next to his bed on the first floor. He had many hallucination type events each night and sometimes during his waking hours. He remained his kind loving gentle self – there was definitely cognitive decline and I knew he never wanted to live like this. I remained hopeful and he still wanted to be treated.
The plan was to radiate the remaining head tumor and actively try to acquire Keytruda off label. Keytruda was $13,500 a dose every three weeks, We were tired of waiting for insurance and realized we were running out of time so we bit the bullet and said start treating him. Luckily Merck stepped forward to cover our expenses.
We started radiation to the head where the remaining tumor sat. He had 12 treatments scheduled. These were painful because he had to lie flat to accomplish this. We had to add yet another drug sublingual fentanyl before each radiation. George started to have some back relief with the radiation treatments. Confirming the back pain was connected somehow to the head tumor.
After 6 radiation treatments he awoke one night saying he was having difficulty breathing. He seemed panicked. We went to the ER. His Sats were 83. They again admitted him to have a pleurovac placed in his left lung the next day. We explained to the staff he was stage 4 and we wanted to get in and out ASAP. We didn’t have time to waste in the hospital. He was back in the hospital with labs jumping all over the place. He stayed another four days and was discharged. He was not eating much anymore.
Finally he was discharged on a Friday again with a pleurovac to drain and O2. Upon discharge we went to the infusion center and he got one dose of Keytruda. The following week he was weaker than ever although not panicked – he slept most of the time – no longer interested in going to sit in the chair. By the following Friday his daughters had both arrived. He went in and out of consciousness – mostly out. The next day, Saturday he passed at home at 10 am. with his adult daughters, the family dog, and myself by his side.