Friday, November 16, 2012

Visiting the Oracle

So - although I will later try and pull together some kind of post to share some stories about the last month from my perspective, I know that everyone is probably most interested now in knowing the outcome of our visit today to "The Oracle" in Columbus.  The Oracle is a specialist in hairy cell leukemia, who has been working on it for his entire career and is one of the most widely published authorities in the field.  While we've been very happy with our doctor here, we got some good advice to seek a second opinion after the first round of treatment.  (Although the first round of treatment for hairy cell is pretty consistent across different doctors, the choices widen in the event that you don't get a satisfactory remission, and we wanted to start understanding those alternatives ahead of time so that we had time to consider our options if that becomes necessary.)

Short outcomes today - we liked the doctor and staff at OSU a lot and they clearly were experts at this.  They were very reassuring on a few points - a) our current treatment plan was solid and they didn't have anything that seemed amiss (good news since we've been really happy with our current doctor, and having a different opinion would have been demoralizing); b) Beth's comparatively low count recoveries were not at all surprising given the state of her disease when we started treatment and the impact that cladribine has on your healthy marrow - it's very effective, but not easy stuff on any part of your body; and c) at this point there really wasn't any reason to think that Beth would not be in the 80-90% of people who see a complete remission after the initial course of treatment.  (We had been nervous about the level of hairy cells still present in our last biopsy, but he reassured us that there really wasn't anything there which would tell us one way or another about how things would look in January/February, and cautioned against doing too much too fast, given the downsides of chemo and potential for even more prolonged pancytopenia (low counts) with more rounds of treatment.)

Net a very good day, but very tiring for Beth - although it wasn't a ton of walking, it was much more than she was used to, and it was a pretty full day - leaving with the girls for school and returning at 4:30.  It was nice for us to have the drive up to Columbus together to chat, since we've not had a date in a while and are likely a couple of months away from going out to eat together!

I will try to post again later in the weekend with some other stories and tidbits from the past month - the girls have been awesome but this whole constant motion thing is a bit draining and I've not felt up to much in the way of posting - but wanted to get this out there for those who were wondering....

We are grateful as always for the love and support so many people are sending Beth's way.


1 comment:

  1. Thanks for the update. I would think it would ease your mind to know that treatment is as it should be. Give your wife a hug from TE-3 and have a good Thanksgiving. We are thankful to have her and that she got to go home.

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