Well, I called my oncologist yesterday to make sure he was OK with the little rhythm I've fallen into - taking Ibuprofen every 6-8 hours to manage body aches, mild chills and daily temperature elevations to ~100.5F. I told him about calling the on call doc over the weekend and starting Cipro and wanted to make sure he was cool with everything so we'd be all set for chemo #2 on Tuesday. Boy, did I get a virtual finger wagging from him! I asked, "But can't the little fevers and aches be from tumor lysis?" He responded, "Of course they can, but they can also be from an infection and the Cipro doesn't cover gram positives and you've got a port and I would have seen you any time. I want you to have counts, chemistries and blood cultures drawn from the port and blood cultures drawn peripherally and call me tomorrow."
So I did all that and...
Counts are normal.
Liver function tests are even better than they were last Tuesday!!!!!!!
AST 55 (3/5 46, 3/17 133, 3/25 101)
ALT 140 (3/5 58, 3/17 273, 3/25 282)
alk phos is higher but it's very nonspecific.
bili still normal
LDH normal (never checked before and I was way worried about it)
When I talked to my oncologist friend in NM about this protocol just after my oncologist recommended it he was really up on it. He said that he's had a number of patients achieve complete and sustained remissions. So I asked him how long it takes to know if someone is going to respond that way and he said that those who go into remission do it fast - they can tell with the first or second cycle.
My oncologist is a little more conservative in talking to me about what to expect - he won't refer to remission with this tumor, only disease control, and he won't check for tumor response until after the 4th cycle. My oncology nurse friend in Portland also has someone close to my age, build and performance status who shows no evidence of disease with the same cancer 9 months after treatment with this regimen.
So there's a big part of me doing a great big Snoopy dance right now, coming out from under the pall that this diagnosis threw over me. During my residency this diagnosis was a death sentence and it's just going to take me a while to adjust to thinking of this as a chronic disease that I can manage (with a little help from the oncologist).
Keep the good thoughts, prayers, etc. coming!