A New Direction
**Originally Posted on Facebook on 8/4/15**
I spoke with both Dr. Martinez (Ana’s hepatologist) and Dr. Yamashiro (oncologist) on Friday after I posted the non update. We have a plan of action now which I’ll try to communicate along with some other info, but it’s a lot of stuff and I was outside in the heat while Ana was getting a haircut when Dr. Yamashiro called (thus, did not write anything down).
So, first some more potentially bad news – Ana’s still not a candidate for surgical removal of her lung tumors due to the number of tumors and (I think) the fact that there are additional tumors in her abdomen (one near her liver and another they’re watching near her colon which is 1.3 cm and didn’t change in size since her last scan. She’s also not a candidate for stereotactic radiation (the targeted radiation she received on her largest lung tumor in March which seems to have worked in that this tumor is – thankfully – no longer growing). Hearing this was a disappointment because it narrows Ana’s options considerably.
So what are her options? At this point, they’re going to try to stop the progression and growth of her tumors with medication. High dose chemotherapy is on hold for two main reasons – 1) Ana is adamantly opposed to undergoing chemotherapy and losing her hair, particularly because it wasn’t effective the first time and 2) Dr. Yamashiro doesn’t know if it will work – he can’t say I.V. chemo will be any more effective than trying a different oral chemo medication or something targeted at the genetic level.
The first thing they will do is switch her antirejection medication to a new drug called Rapamune. If anyone Googles this drug, you’ll see there’s a black box warning specifically for liver transplant patients, but Dr. Martinez (remember, I spoke with her on Friday) assured me that she has about 10 – 15% of her patients on Rapamune and they’re doing well. The contraindication is more for those closer to transplant and Ana’s about to hit her three year liverversary (in February). They’ll keep her on a very low dose of her current antirejection med for a couple of weeks while they monitor her liver enzymes and rapa level in her blood. Don’t get me wrong – this is fucking terrifying. She does well on tacro and her liver enzymes have been perfect for months. I hate to stir up the pot, but the theory is that the tacro may be inhibiting her immune system in such a way as to allow the tumors to grow. I’m glad they’re trying this – I’m just scared.
The other thing Dr. Yamashiro wants to do is switch her off of the Votrient (oral chemo med) to another oral chemo drug in the same class. This is also scary because though she’s lost about 22 pounds since January and her hair has turned white, she’s tolerating the drug fairly well. Switching will introduce more potential side effects, and also if it doesn’t work we could see Ana’s tumors “rebound” as Dr. Yamashiro put it – that means they could potentially grow rapidly since the Votrient definitely seems to be slowing tumor growth.
We discussed other possibilities that I emailed him about, including the crizotinib and the use of steroids to inhibit tumor growth. He had good reasons for not starting her on these drugs at this time – but this is getting very long (and his explanation was complex, I’m not sure I can communicate it with any level of clarity). What struck me about this conversation with Dr. Yamashiro is how incredibly brilliant he is – and that he is considering everything I put in front of him (and more) and trying to solve what at the moment is an unsolvable puzzle.
There is no place for ego in pediatric cancer. At least, not in my experience in working with a variety of specialists at Columbia Presbyterian. Every single one of the doctors that care for Ana have one goal in mind – to extend her life, if not to cure her. I truly believe that she has come this far because of these amazing people, and that they have also helped to preserve her quality of life.