Choosing a Treatment
2/18/03: Assuming I really am at stage 2A, the question for treatment is whether to go for the standard regimen (ABVD chemotherapy plus radiation), or with the new regimen being tested at Stanford (Stanford V chemotherapy, with radiation if any tumors are big enough to warrant it). ABVD is 3 months of chemo, given every other week, followed by five weeks of radiation. The Stanford V regimen is either 12 weeks of chemo, or 8 of chemo followed by 5 of radiation, and the chemo is given weekly. The drugs in the Stanford V regimen have fewer long-term effects on the lungs.
Another question is where to be treated. As soon as I got my diagnosis, my surgeon got me an appointment with Dr. Yu at Camino Medical Group, and my dad got me an appointment with a Stanford doctor (Stanford has a research group that studies lymphomas). I’m torn. Camino Medical Group: local, caring and convenient, or bureaucratic and behind the times? Stanford: world-class facilities with world-renowned experts who will work with me to find the best treatment, or researchers who’ll treat me like a statistic for their experiments? OK, so I’m exaggerating for effect, but that’s the dilemma. This week, I’ll meet with Dr. Sandra Horning at Stanford, and again with Dr. Yu, and hope to have a decision on the treatment by Friday.
2/19/03: I had my appointment at Stanford yesterday and have decided to be treated at Stanford. The doctors (Dr. Horning and Dr. Loo) definitely seem top-notch, and I really like Dr. Horning’s nurse as well. I also met the social worker and the associate director of patient services. While Mike and I were waiting for Dr. Horning, a medical student came into the examination room because he’d heard I had “interesting” lymph nodes and wanted to give them a poke. I could imagine this getting old after a while, but I really didn’t mind.
From my CT scan films and radiologist’s report, Dr. Horning said that stage 2A seemed right, but more tests were required to determine the exact treatment. Depending on the size of the “bulky adenopathy” (aka “tumor”) in my chest cavity, I’ll either have 8 or 12 weeks of chemo, followed by radiation. Dr. Horning said that the CT scan looks like I’m right on the border of bulkiness, and she ordered a chest x-ray and PET scan.
I still have a few choices to make. If it’s not bulky, then I can choose whether to have the full dose of radiation, or take part in a clinical trial that’s testing the efficacy of a 2/3 dose. If it is bulky, then I can choose ABVD or Stanford V, or I can be part of a clinical trial where I’ll be randomly assigned to ABVD or Stanford V. Being randomly assigned doesn’t suit my personality. Given that I’ll need radiation to my chest, and given that the Stanford V regimen is easier on the lungs, I’m leaning toward Stanford V. Mike still has some questions, based on an Italian study that shows Stanford V coming out much worse than ABVD (Dr. Horning said that the study’s methodology was flawed. Also, the study doesn’t break out results for patients at stage 2 vs. the other stages).
The bulky-vs-non-bulky question will be decided Monday, when the “tumor board” meets (I did not make that up), presumably with the results of the chest x-ray. The oncologists, radiologists, pathologists, and maybe some other people at Stanford get together to review each new case and make recommendations for treatment. Question: is a tumor board like a bug council?
Regardless of whether I go with Stanford V or ABVD, and regardless of how long the chemo will be, I’ll start on the 25th. My mom will fly in that day to be with me.
2/24/03: The tumor board met today, and it’s official: I’m stage 2A, non-bulky. All the scholarly papers I’ve read refer to this as “favorable early-stage Hodgkin’s Lymphoma”. I’m all in favor of favorability (Mike is in favour of it). Unless Stanford has changed their thinking since last week, that means 8 weeks of chemo. I’ll still need to think about whether to participate in the 2/3-dose-radiation trial.
I spent part of the morning reading up on side effects of the treatment before deciding that eating cookies was a far better way to spend my morning. Tomorrow morning’s mood prediction is stress with a chance of freak-out, so Emmy and I will spend it with our friend Mark and his son Kyle.
2/25/03: Had another meeting with Dr. Horning, Dr. Loo, and Sheila, and settled on 8 weeks of Stanford V plus the full dose of radiation (30 “Gray”, which is lower than what most hopitals consider standard (36) but which got good results in the previous Stanford V trial for patients at my stage). Our thinking was, although I’m not “bulky”, I’m on the bulky side of the non-bulky patients. Reducing the radiation to 20 “Gray” didn’t make a lot of sense, particularly since the line between bulky and non-bulky is frankly somewhat arbitrary.
All systems are go, and we’re ready for liftoff.