Michelle and I spent the day at Massachusetts General Hospital yesterday. Our hope when we went in was that the doctor could give Michelle something to address the mucositis that was occurring in her throat. He did prescribe "miracle mouthwash", essentially a compound of Maalox, Benedryl, Lidocaine. This often occurs for patients being treated for other kinds of cancer, notably throat and blood cancers. Their suffering paved the way for treatments of mucositis.
The other thing we wanted to know was the blood work. For the past few blood tests, Michelle's white blood cell counts had been a bit low and her creatine kinase (CK) enzyme levels had been much higher than expected. When we met with the oncologist in the morning he had said her white blood cells were back to normal, but a few other metrics like the CK were still pending. He asked that Michelle return after her eye exam for a bit of IV fluids.
As happens every week they also gave her a detailed eye exam. One of the two drugs is known to affect fluid levels in the eyes for a small percentage of patients. And once again, Michelle passed that exam with flying colors. When I hang around in that waiting room, I feel so sad for so many of the patients there. Many of them are having real eye issues. It made me think of the Lions Clubs around the United States and their charitable works.
When we came back for the fluids, her oncologist came to the infusion lab to give us the latest update. The CK levels arrived and were well beyond high and at unsafe levels. A second blood draw happened just to confirm the reading. He had the IV fluids bumped up from ½ liter to a 1½ liters of saline to help her kidneys flush the CK enzyme out. He said this reaction to the drugs had not been seen before but that he must pull her off the clinical trial. It may be hurting the malignancies but the side effect is too dangerous to continue for long.
Michelle will have several days off to let her body, her kidneys, and her throat recover. It is likely we will shift for now to the more conventional Xeloda regimen. We wanted to give a promising clinic trial a try first, while she was still at the peak of health, rather than as a last resort. For now her orders are "gargle, drink, pee, and rest". In other words use the Miracle Mouthwash. Drink a gallon of water a day. Let the kidneys do their job (ahem). And unlike his usual recommendation of continuing her athletic exercise routine, take a few days off. In a couple of days Michelle will go back to Nashua Oncology to draw labs again and likely get more IV fluids. We'll followup at Massachusetts General Hospital in a couple of weeks.
Yes, it was a bit sad. I'll admit there were tears from both of us. This doesn't mean that the drugs had no impact on the tumors, but the collateral damage would be worse. If we kill the tumor but ruin her kidneys and liver, what do we gain? And now cancer researchers know one more thing about the drug combination and its possible risks.
Thankfully the kids handled things at home well. We expected to be home before they got off the bus but it takes a few hours to deliver 1½ liters of saline. Michelle had a beef barbecue stewing in the crock pot for them. They got along well with no arguments. Thank you God. When we aren't there, they are so prone to getting ticked at the littlest offense from a sibling. Michelle's friend Tammy stopped by about an hour before we got home to check in on them and keep them company. We arrived around seven o'clock after a brief stop at Walgreens for the prescription mouthwash.
I apologized to Timothy about not being able to do much tinkering with him. We also learned that he had an awesome score on the math section of his standardized NWEA test. Sounds like someone else I know back at his age… As Tammy and her kids were heading out, I was following in the tradition of my dad and falling asleep on the couch. Between waking up at 4:30am for the Boston trip and fighting the two long commutes, I was pretty tired. I setup the humidifier in our room to help Michelle's throat. Since the boys were dawdling, she put them to bed.