A Long Day...

John and I left the house this morning at 9:30. He had a routine appointment with Dr. Flinn at 10:30. And his brothers were bringing Marian from Evansville to meet us for her appointment at noon.

John continues to do well on CAL-101. He just finished his eighth cycle. All of his nodes are greatly reduced and stable. Some of his more stubborn lymph nodes (under his arms) are still shrinking. And his blood looks great. Dr. Flinn is very happy with John's response and so are we. CAL-101 came along at the perfect time for John.

Marian has also seemed to respond well to her combination therapy of CAL-101 plus Rituxan. Her Rituxan infusions concluded at the end of November. She's had no side effects. Her white count has been coming down and her platelets have improved dramatically. However, for the last several weeks she has started feeling worse instead of better. And we know now that some of the symptoms John and I had been noticing (and attributing to age) were the first signs of hypercalcemia.

In December, her blood came back with a slightly elevated calcium level. I went online and read that hyperparathyroidism is the cause of hypercalcemia 99% of the time, so I made an appointment to take her to a specialist in Evansville the following week. I ran that by Dr. Flinn's nurse, who checked with him, and said that would be fine. But prior to that scheduled appointment, Marian began feeling worse (at home in Evansville) and Monday night she called to tell me that she was being admitted to the hospital. She had gone to see her primary care physician for her cough that morning (bronchitis) and he drew blood to check her calcium (because she told him it had been elevated). That afternoon, her PCP called to tell her to go straight to the hospital. Her calcium had shot up to 13+ over the weekend. A blood calcium level of 13 is considered an emergency situation. Hypercalcemia can be a life-threatening condition.

She was given IV fluids and Zometa in Evansville and her calcium level was stabilized. As I previously mentioned, the diagnosis was dehydration. But that didn't make sense to us because we knew she had been eating and drinking water all weekend. She was with family until Sunday night and her intake was being closely monitored by my sister-in-law.

Before she was even released in Evansville, I made an appointment for her to see Dr. Flinn today. She was discharged yesterday afternoon with a normal calcium level. But not long after she got home, she started feeling bad again. She didn't sleep well last night. She had some night sweats and chills. And she said she knew that her calcium must be going back up because of how bad she felt. She said the most minimal exertion leaves her short of breath and she felt a loss of energy immediately after being disconnected from the IV.

Dr. Flinn ordered a calcium level stat. But we still had to wait quite a while for the results to come back from the lab. When the results arrived, they showed that her calcium had already gone back up to 11.9 in less than 24 hours. And that's why he admitted her. He wanted to keep a close eye on her and keep IV fluids in her while he is in the process of locating the cause of this complication.

Through bloodwork, he will eliminate some rarer conditions that cause hypercalcemia. Marian's PCP already ruled out hyperparathyroidism. But I'm pretty sure Dr. Flinn is rechecking that, too. And as soon as he can schedule her, she will go for an out-patient PET scan. That will probably be early in the week. And until we figure out what's going on, Dr. Flinn has taken her off of CAL-101. He does not think CAL-101 has anything to do with the hypercalcemia. He knows of no other patient who has developed hypercalcemia on CAL-101. But he doesn't think it will cause her any problems to discontinue it until we pinpoint the problem. Once the cause of the hypercalcemia is addressed, she can always resume therapy with CAL-101.

In a small percentage of CLL patients, the CLL suddenly transforms into an aggressive lymphoma (Richter's Syndrome) for unknown reasons. One symptom that occasionally accompanies this transformation is hypercalcemia. From the reading I have done over the last couple of days, this transformation can be sudden and can even occur when a patient is in a complete remission. The PET scan is one of the tests that is used to detect the transformation. But this sudden change is just so hard to make sense of because she has been doing so well prior to the last few weeks. In fact, I've gotten so used to Marian telling Dr. Flinn, "I feel great" during every checkup that I can hardly believe my ears hearing her suddenly saying, "I feel terrible."

Jeff stayed until we got her settled into her room. John and I stayed until they came to take her for a chest x-ray. We hadn't eaten anything all day except an oatmeal cookie from Starbucks. And I could tell John was completely wiped out (falling asleep in a chair). We drove through Marco's on the way home. John had a sub sandwich and I got a small pizza with every intention of limiting myself to two or three slices. I didn't stop eating until I was halfway through my fifth. It's not good to let yourself get that hungry. Especially after such a stressful day.

I don't know exactly how long Dr. Flinn will keep Marian in the hospital. But I'll be spending most of my time at Centennial until she is released.

And now I must go burn some of those excess calories.