Saturday, March 26, 2011

First of second set...done!

Brent and I had a pretty easy trip down to Tampa on Thurs. On Friday we were off to Moffit, same nurse as last time, did well for my IV start. Saw a new (both to us and fairly new to Dr. Weber) NP who did a really great job. Her review of systems and history were excellent. Her exam rivaled Weber's....perhaps with a little less verve! :>) She was very knowledgeable and I didn't have to hear anything about spackling! She did a complete eye exam which is good since Weber told me last time that at least one patient had developed retinitis on the protocol but was responding well to steroids. She also told us that my case (or at least my lung films) had been reviewed at the "discussion board" where the NP's, surgeons, radiologist and Weber go over patient findings and such. It was determined that the right lower lobe lung fluff was again...nothing is good. When talking about my skin changes which include more vitiligo as well as the increasing size of some darker nevi/moles, she listened well, examined closely, and told us that other patients on the study were also experiencing similar skin changes and she didn't think that there was anything negative to worry about at this time (and I agree). So...I will be happy to see her again on my next several visits.

It seems that neither of the two Kim's, who were study coordinators, are around anymore. We met the new one, Latisha, I believe, who though new, seems much more together and forthcoming than the other we'll see.

Labs were good. My LDH, a tumor marker of sorts, has never been above the high end of normal. However, its peaks were just after my bronch and about 4 weeks ago. This time it was the lowest it has ever been....for whatever that's worth. My hemoglobin is a bit low....probably thanks to the leukophoresis last week...which might be contributing to my tiredness. Otherwise, all else looked fine.

Got home fine. Got a few chores done and plan to veg out the rest of the day. Roo has to head back to Tech tomorrow. Have to admit that I feel rather frustrated and a bit gypped that I didn't have more time with either of the kids on their respective breaks...but that's the deal I suppose.

Cold and rainy here...but April showers bring May flowers... Atlanta is bursting with red buds, dog wood blooms, wisteria and a fair amount of pollen! Happy spring to all of you! with love - c


  1. I usually always saw Dr Weber because my app'ts were on Wed and thats his regular day in the office..Kim Smith just moved to part time and works 3 days a week, while the very new Kim Wong(decided to work at another Hospital). Most the CRU nurses are awesome! Lattie is suppose to be good =:o)

    My LDH stays just at 312-330 so I hope that's good...but from what I was told it just shows organ damage and isn't a real reliable marker for us...Keep an eye on your thyroid- mine was fine the first 12 weeks but decided to go nuts during the is still wacked out and I am on Synthroid for now. We hope it will return to normal...
    Good luck with the trial...

  2. Thanks Lynn. Continued best of luck to you as well. I hope you get to feeling better now that you get a bit of a break and that your thyroid will kick back in and/or that your Synthroid stables things out. Yes, Moffitt is an amazing place. It's a shame that it is needed, but since it is, it is good that it is available and has the resources, equipment and staff that it does. It made the top 20 list of hospitals in the latest US News and World Report ranking. Yours...