After all the waiting and phone tag, we finally had an appointment with an oncologist in our town. I went with Rich for moral support and to take notes. We got a little nervous when the nurse didn't seem to know why we were there, but she took Rich's vitals and said the doctor would be in soon. She also warned us that he was a talker so it might be a long visit. We met with Dr. Michael Lee at Virginia Oncology and are already very impressed. He's upbeat, genuinely interested in all the details of Rich's situation and happy to explain everything. I've already emailed him pictures of Rich's insides, so I think that means we're pretty close now.
Dr. Lee says that he is going to spend the next two weeks doing some more homework on what our options are and talking with some of his colleagues. More so than ever, I got the distinct impression that no matter how talented or experienced the oncologist is we're talking to, no one really knows what to do about Rich because no one has heard of someone with what he has. So there's no standard operating procedure for these things.
I did specifically ask Dr. Lee if this is cancerous cells or if it is cancer in that mucin is somewhere it shouldn't be and growing without an exit strategy. Again, I had to give him credit because he said, "honestly, we don't really know. It could be any number of things that made this happen so we're all sort of guessing." Fair enough.
We thought before that Rich could have this monoclonal antibody treatment with minimal side effects. But it's looking like chemo will be the route. However, there are all kinds of chemo (we're finding out).
Normally, Rich would get Folfox for the chemo combined with Avastin as a different type of monoclonal antibody. The one that Hausner mentioned was a combo of Herbatox and Vectibix that attack specific types of cells. But Avastin is one that blocks proteins to prevent new blood vessel growth so that it starves the cancer.
Folfox would be administered via a port near his clavicle for 48 hours every two weeks. We didn't like that plan. The port gets all jacked up if you try to fight or play hockey or roll around with your three-year-old.
So instead we can try Xeloda which is the oral version of the 5FU in Folfox. That would be a pill Rich takes twice a day for two weeks and then takes a week off. The other half of that combo is Oxaliplatin which is administered via an IV for three hours every three weeks. So no port necessary. The Xeloda side effects are mild nausea, hand and foot soreness and some fatigue. The Oxaliplatin tends to have worse nausea on that first day but can be treated with Zofran or the like up front. It also can have increased cold sensitivity, both outside and inside (e.g. drinking cold liquids can be painful). None of these drugs cause hair loss or significant weight loss.
Dr. Lee ordered a fresh CT scan to see where we are now as well as blood work to get all new tumor markers. It will be our new base line. On the 21st, Rich has "chemo training" with a nurse practitioner to go over all the chemo drug options and what they entail so we can be better prepared. And then hypothetically he would have his first treatment on the 23rd. We have no idea how long we would need to continue the treatment until we see how it affects the CT scan and blood work results. It will also depend on Rich's side effects and how he handles it.
In the meantime, Dr. Lee is still going to do more homework and ask around and see if there's something else we should try first. Lee was clear to say that the chemotherapy would not cure him. It would only slow the growth or at best shrink it some. But we've already talked about the roommate analogy, so if the slime in his belly is not bothering him, we don't need to freak out and make a mess trying to wipe it out.
Rich said he was pleased his pulse was only 75. He was pleased he weighs 225 (up from 205 the day we left the hospital). And he likes Dr. Lee. He is still full of worry and sadness about the whole thing. But I'm optimistic as always.