Thursday, October 9, 2014

Sixteenth Trip to the NIH


A whole month has gone by too fast.  It was a month from today that Dan and I flew back for my NIH appointment.  Seems I’ve about lost the inclination to post updates, but I don’t want to just disappear without a trace, so here’s a recap.  Check out my schedule and you’ll see that they kept me pretty busy this time.

Wednesday, September 10, 2014 – 27month follow/up

09:00AM- nothing to eat or drink after 9AM in preparation for your CT scan.  You may take medications with sips of water

9:45AM – 3rd floor, Day Hospital, 3SE-S, for blood draw from port.

11:00AM - 3rd floor, Procedure Unit, 3SW-N, for non-sedation bone marrow biopsy.  Dr. Farooqui will do the biopsy, please arrive 15minutes early, if possible

1:00PM – 1st floor, Radiology for CT scan.  Your scan is actually scheduled at 2PM, but you must be there 1hour prior in order to drink the oral contrast.

To follow- 7th floor, Outpatient CLL Clinic, OP 7 to see hematology fellow, followed by Dr. Farooqui and the CLL team.

To follow – 1st floor, Pharmacy to pick up study medication

Thursday, September 11, 2014 nothing to eat or drink after midnight Wednesday night in preparation for your lymph node biopsy.

08:00AM (on Call) – 1st floor, Interventional Radiology for lymph node biopsy.

to follow- 3rd floor, Day Hospital, 3SE-S, for recovery after biopsy.  The CLL team will come see you in the Day Hospital 

I just wrote a few of the CBC numbers as Dan read them, so definitely not all-inclusive.  CT scan was ok, will ask for a little more clarification on the ln biopsy in Dec., but best of all was the bone arrow news.

 WBC: 6.95 - normal range 3.98 to 10.04

Alc: 1.74 - normal range 1.18 to 3.74

Plt: 190 - normal range 173 to 369

Rbc: 4.74 – normal range 3.93 to 5.22

Hgb: 12.7 – normal range 11.2 to 15.7

Immature granulocytes: .6 – normal range .1 to .4

Absolute immature grans: .04 – normal range .01 to .03

The most exciting news to me was from the bone marrow biopsy.  The CD79a marker which specifically measures the amount of CLL in the bone marrow showed substantial improvement.  It was at 90% just prior to starting the trial; went down to 80% after two months; 35% at six months; 40% after 1 year; and is now down to 20%.  That beats the chemo I had back in 2007.  After it was finished, CD79a was still at 30%.  So 20% looks pretty good to me. 

Not sure I’ll keep updating.  Not sure I won’t, either. 

Love to all.