latest CT results

Hi everyone,

Val has been on Gemzar for about 8 weeks, so she had a CT scan Sunday and we met with the oncologist yesterday. The scan showed what the doctor called “mixed results”: in the lungs, some existing cancer nodes stayed stable, and some were smaller. This is way better than the growth we saw last time. On the other hand, on the left side of her neck there is a new small growth next to the one we’ve been tracking in her lymph node. There was also an inconclusive shadow at the carina, the place where her trachea divides. Her liver and adrenal glands are fine.

So. Gemzar is not a perfect miracle match for Val, to our disappointment. But it is slowing the cancer growth somewhat. Also, Val has been feeling pretty good, which the doctor put in the possible plus column for Gemzar, and the drug doesn’t knock her system flat the way some of the other drugs have. Still, the doctor thinks it is unlikely to slow cancer for long, plus the longer you are on it the greater the risk of excessive bone marrow toxicity. So Val will continue with Gemzar for a short time while deciding among her next options.

These options include:

A) Starting the next drug the oncologist, Dr. T, would suggest, which is called Navelbine. Since Val is at fourth- and fifth-line care (meaning she’s already been through many of the big guns), all these drugs have a similar (not enormously high) chance of working. But if one drug didn’t work for you, the next one might. Advantages: a new drug. Disadvantages: causes dangerous inflammation of veins, so would require a PICC line.

B) Joining a randomized open label trial of a drug called Eribulin. In this trial, Val would either get Eribulin or be in the comparison group, in which case she’d go on Navelbine. Possible advantages of going on the trial: she might get access to one more drug (Eribulin). Eribulin has already been through two trial stages, so its (relative) safety is established; now they are trying to decide on its efficacy. Notable disadvantages (beyond the side effects, which are unpleasant for all of these drugs): she’d have to go to the clinic more often for extra tests to gather data for the trial studies. And going to the clinic is a major time-sucking bummer. Also, one of the research trial nurses has so far been an insensitive, insecure, gatekeeping jerk, and dealing with her is seriously distressing.

C) Meanwhile, we are looking into other trials (it turns out you have to look for trials yourself, once you’ve gone through whatever your oncology team has available). And with the help of many friends we are trying to arrange for a consultation with another, well-reputed oncologist outside of Kaiser. Insurance will not cover this so we are also waiting to hear how expensive it will be, but he has already agreed to meet with Val.

Although there are many excellent nurses and staff at the oncology clinic we’ve been attending, several of us are developing reservations about their team organization and ability to advocate effectively for Val. It’s been a trying couple months, human-relations-wise, which has provided another unwanted layer of frustration and exhaustion. We seem to be plowing through it, so wish us luck in continuing to connect Val with the best care possible.

Deborah