Well, we received a call around dinnertime this evening from one of Patty's cardiologists. Her PRA numbers were relatively unchanged, although the doctor claimed that these numbers show "some improvement" over the numbers from last month. Wow. In addition, he said that some of the specific antigens that were new to the last reading did not appear this time around, which would suggest that the drug regimen may be having some minor positive effect. Overall, though, the numbers speak volumes about just how resilient Patty's antibodies truly are.
We did get a sense this time that doctors are recognizing that Patty's problems are unlikely to have a simple resolution, and that the steps taken thus far aren't yielding hopeful outcomes. Also, this doctor said they are now wanting to weigh quality of life more heavily in options being considered. We are a bit worried that doctors are feeling we are resistant to new options; this isn't the case. We just want to make sure that Patty doesn't try one illness-inducing treatment after another without ever having a chance to enjoy a few weeks or months of nausea-free living. I want my wife to be able to wake up in the morning and immediately do whatever she wants with her day, without having one malady or another keep her down.
Sometime in the near future, doctors are supposed to get back to us with some additional thoughts about next steps. Here's what we either think or know:
- We know that one option being considered is to hit Patty with huge doses of Cytoxan intravenously once a month, rather than have her take pills daily that make her sick. The idea here would be to keep Patty premedicated (or, as I would call it, "doped up") for the time her body would normally be suffering side effects.
- We do know that an appointment is being scheduled with a lupus/immunology expert. Of course, it will be hard to truly understand the lupus influence since Patty is on cytoxan, and our understanding is that Patty will always be on cytoxan or similar drugs. This issue is at the root of our challenge to doctors -- if Patty is always on a drug that makes her perpetually sick, how can she ever enjoy any real quality of life?
- We know that total lymphoid irradiation (TLI) is being considered as an option. This is a treatment usually reserved for post-transplant rejection issues, but it has been successful in certain instances to reduce antibodies before transplant. We're wondering how likely it will be that the insurance company will agree to pay for these "hail mary" types of interventions.
- The other option on the table is administration of the drug rituximab. This drug is usually used to treat non-Hodgkin's lymphoma, but has been used in recent years to help reduce antibodies before renal transplantation. If I understand correctly, doctors hope that a side effect of the drug -- depletion of antibodies -- will work in Patty's favor. Although two doctors suggested this drug is "well tolerated by most," online stats suggest that 99% of people experience adverse effects, several of which sound pretty frightening. If I understand the literature, three of the 769 study subjects died of cardiac events shortly after receiving their first dose, and others contracted other serious conditions, such as meningitis. As always, these are the types of drugs that can work near-miracles, but there always seems to be an accompanying gamble.
Well, that's enough for now. Our emotions are fluctuating tonight. We've had a few glimmers of non-denial, which we don't seem prepared to face right now. For the most part, Patty has been giggling about how doctors are once again saying they will "put their heads together;" our presumption then, and now, has been that they are thinking and talking about Patty's case, so this struck Patty as a bit humorous. Perhaps the next time we write we'll have let this sink in a little more. I hope not.