Tuesday, June 14, 2011

Busy weekend...as usual!

Last Thursday, it was back to Tampa. Saw Dr. Weber on Friday. Brent had lots of questions. Weber repeated the info about my cohort in the study...saying that still...only two, early on, had had to withdraw from the study. Did find out an interesting factoid. Weber said that the FDA forced him to use Stage 4 disease patients in this study. He said it as though he had wished otherwise, because we are the group that has such a dismal prognosis no matter what you do to us. Didn't have the presence of mind to ask why the FDA did that...but anyway. He told Brent that I was in an elite group...since all of us, except the initial poor two, have remained disease free, me for 6 months and some in this study for 9. Folks in this category are lucky if they stay disease free for two months. So....for what it's worth.

Leukophoresis was rather hectic...what with waiting for over an hour before anything was started. Then, IV's were started with only one stick each, which was good, but they didn't seem to be functioning well. I do have limited vein options given what they've been through over the past 6 months, and especially in the last week. At any rate, the machine kept beeping indicating poor flow and the techs would come fiddle with things. Ended up staying on the machine for over 3 hours and had to stay stock still as the lines were so precarious. Got a terrible crick in my neck..that is still aggravating me. Also discovered another factoid. I asked about the gauge (size) of the lines they put in to collect and return the blood for the phoresis and was told that it is one size smaller than that used for blood collection at blood banks. Well...I think that is STUPID!! The pain is not appreciably less, with that slightly diminished size, but the size is too small for red blood cells to funnel through unharmed (that's why blood banks use a larger size...no need to collect and give damaged cells to patients). NO WONDER I GET ANEMIC AND FEEL SO TIRED after. They go to all the trouble to give me back most of the red blood cells but they are so buggered up that they don't do me that much good. What's the deal with that?!!!! Anyway...the whole deal took so long that it was a bit of a rush to get to the airport in time for our flight. Had to be felt up once again, for good measure, by the wonderful gals in the TSA in Tampa! Good grief!

Anyway....got to spend some good time with the Roo. We picked her up on our return to Atlanta and brought her home with us for some R&R. I took her back to Tech on Sunday afternoon. She's a real cutie. Miss her already!! Work's been fine, but busy.....and tomorrow Brent and I will be returning to Atlanta when I get off work for some meetings he has and some relaxing and some visiting with Rosie. Looking forward to the gardens, maybe the art museum, and DeKalb. We'll see...just gonna chill and return home on Sunday.

Here's to plump RBC's!!!!! - c

FYI - Ipilimumab is now approved and on the market under the brand name of Yervoy. Don't ask. I don't know where they get these names. It's yours for the bargain basement price of a really dreadful diagnosis and $30,000.00 per dose. Treatment requires 4 doses!!! And, my anti-PD1 infusion also goes by the name of MDX1106....so don't let all this confuse you if you see stuff being reported from ASCO (annual oncology conference) that was just held in Chicago. c


  1. I think that they have a big room full of letters, and the play pin the tail on the donkey to get the name. BUT it is done with solid gold pins with silk ribbons, to account for the cost. And of course, in order to manufacture the meds, they sprinkle some diamond dust on the equipment so that it runs more smoothly.

  2. I think it must be something like that, Roo! :)
    Not sure I've ever been elite before! Ha! Love y'all!