Ana was a trooper during the PET scan yesterday. She guzzled the contrast and didn’t harm anyone wielding a needle (including the grumpy phlebotomist). She needed to get labs drawn for pre-surgical screening.
Jim and I waited with fluttery stomachs all day today for the results, and Dr. Martinez finally called around 3:30. They did find some additional nodules on the PET scan that weren’t detected on the CT scan. These are all likely lymph nodes (one in her neck, another in her abdomen and of course the lung nodules). They are all showing activity, but it’s not clear what this means. Ana’s going to get the mass in her abdomen removed on Monday (or maybe just some of it will be removed) at 1:00. She’ll stay overnight for observation and will be home from school all week (for recovery).
So what’s going on? It’s difficult to write about it because it’s complex and they’re not really sure yet. The masses in her abdomen may be a recurrence of the original myofibroblastic tumor, or they may be lymph nodes which are related to what they’re seeing in her neck and chest.
There is something called post-transplant lymphoproliferative disorder (PTLD) which is a risk for all pediatric transplant patients (not just liver transplants) that I’ve been worried about, but haven’t mentioned on the blog. I mean, I may have mentioned it briefly, but I’ve been deliberately trying NOT to worry about it because it doesn’t happen with every kid. However, Ana’s oncologist feels that the lymph node activities on the PET scan are classic for PTLD even though she’s not showing other symptoms (these would include feelings of malaise and a positive EBV test).
If this is PTLD, then the first course of treatment would be to completely stop her anti-rejection medication. Yes, you read that right. We asked Dr. Martinez, “um…for how long?” and the response was that she has some patients who are off their medication for years. YEARS.
Let that sink in.
Once again, everything I THOUGHT I knew just went to hell. Dr. Martinez says these patients do fine. They do FINE. Some start to reject and have to start their tacro again. Some need prednisone if there’s rejection activity. But many do very well. It makes me wonder why it takes PTLD to motivate doctors to wean patients from anti-rejection medication. I don’t understand anything. I’m lost in the woods…
But I digress…
If reducing or stopping the anti-rejection drugs doesn’t work, the next course of treatment is a type of chemotherapy that’s not really chemotherapy. It’s called rituximab and this WebMD article kind of outlines what it is. Bottom line — hair loss is not a side effect. According to Dr. Hochberg, patients on this treatment do very well. I can’t honestly say I understand how this works, but I think the key to its effectiveness is that it’s a monoclonal antibody and it boosts the part of of Ana’s immune system that’s been compromised by the tacro. I could be absolutely wrong about that though. I need to do more research here.
There’s a PTLD expert at Westchester who works closely with Dr. Hochberg (his name is Dr. Cairo and he’s head of the oncology department). There’s another expert at Columbia who was trained by Dr. Cairo and well, lots of experts so I’m positive we’re in good hands.
Ana is doing well with all of this. She’s at her school dance right now and will sleep over her friend Sophia’s house tonight. Here’s a shot of the girls all dressed up and ready to go.