the next thing, and the next thing

Lovelies, here is the latest.

Val opted to join the trial with Eribulin, but was randomized into the control group. Therefore she does not get the trial drug, but instead the drug selected by her oncologist, which is Navelbine. This is so caustic to the little veins that it requires a PICC line, which is a tube inserted in her bicep to snake up through her veins and snuggle up right next to her heart, where the medicine will be directly dispensed to the larger blood vessels weekly. The PICC line means she always has 8 cm of tubing sticking out of her, with all kinds of bandages and tape to keep it in place and protected, and all kinds of warnings not to sweat, not to lift more than 10 pounds, not to move the arm too vigorously — in short, it feels like a very confining situation and an unwelcome symbolic pathologizing of her daily life and body. If she continues with Navelbine she will have a port surgically implanted instead.

She is also aware of an increasing shortness of breath as well as lower energy levels.

Yesterday we went to OHSU for a second-opinion consultation with a well-known lung cancer specialist, Dr. S, which felt really useful. Here are some highlights from that meeting (cribbed in part from our friend Kyla’s summary):

– Dr. S feels that while Kaiser has done right by Val with treatment, there are some more advanced tests and trials that OHSU can offer, so Val was immediately put into a program that will allow her tumor to be tested for a broad spectrum of genetic mutations (around 50 genes tested for hundreds of mutations). There’s a small chance if she has one of these mutations, a targeted therapy could be used. We should have results in about a month. Meantime, Val will continue on the Navelbine. She is scheduled for a scan in a few weeks.

– Dr. S wondered why Val had been taken off Avastin a couple years ago — had she started having bad side effects? The answer is that because studies continue to be inconclusive about Avastin’s efficacy, and there is some risk of internal bleeding, our doctors began to feel nervous about leaving her on it for so long. However, Val had been doing very well on Avastin (we don’t know if that was coincidental, of course). Dr. S seemed to feel that Avastin could still be an option down the road, especially since Val didn’t see many side effects. This could possibly be combined with an oral chemo called Tarceva if a targeted therapy is not warranted and she is done with Navelbine. She may also at that point qualify for some kind of clinical trial at OHSU.

– In terms of practicalities, Dr. S also confirmed that, if any growths directly interfere with Val’s body function (like get in the way of her breathing), that can be addressed with targeted radiation (during a hiatus in chemo). He also explained that death from lung cancer is rarely painful and does not typically result from a slow suffocation, something I had feared. It’s more that a body can eventually be overtaxed by the amount of cancer present, and simply lets go, for example during sleep. These are the sorts of things I find reassuring these days.

– At this point Val is weighing the possibility of switching her care to OHSU entirely, as they have a robust clinical trial program. They are also partnering with the University of Washington, which would further increase the amount of trials possibly available to Val. We spoke with the social worker there about this and are looking into options of leaving the Kaiser HMO and seeing if Medicare plus commercial insurance might affordably cover treatment at OHSU. Even if Val chose to stay with Kaiser, Dr. S will be working with Dr. T at Kaiser to advise on treatment options. He is willing to be available to Val via email or phone if she ever wants to consult with him on options that Kaiser is offering. This is an incredible addition to the team, as he is renowned in this field.

Overall the visit was very positive, with considerate staff and a reassuring air of confidence and competence. It was illustrative to see this system at work versus our recent experiences with Kaiser (which Kyla enjoyed quoting me as calling “an irritating exercise in Zen tolerance”).

Next steps: continue with Navelbine until the next CT scan and see how it’s doing. Await the results of the genetic testing to guide our next moves. Try to track down insurance advice to figure out if and how we might switch away from Kaiser to OHSU. Keep on keeping on. Eat all these ripe tomatoes.

Love, Deborah