Raw Data from seeing Dr. Kipps and starting lenolidamide

Here are my very rough notes written in the courtyard of the Moore Cancer Center before the drive back to Newport Beach from seeing Dr. Kipps in San Diego.

My own musing on what it all means will follow, but this may get you CLLers thinking about the next move.

I am warning you these are unedited notes. And this is all Kipps, or at least my understanding of Kipps, and not my comments on his comments:

Dr Kipps 4/26/10

ITP RX (Dex-R) recommended by Dr. Miklos?

Kipps not keen as he feels ITP may just recur even if it works (which he doubts) and no problem with the present approach of IVIG I am getting a twofer (infection protection and ITP management)

Continued IVIG

IVIG OK for years for ITP may be able to get down to every 28 days or even DC may have turned off the mechanism of ITP with the IVIG, it also protects against many virus, some unknown - has strong anti-viral activity and effects we don’t understand

BTW, Kipps thinks it is the R in the FCR that lead to the life extension in German Studies

Consider lenolidamide- risk? DVT, decreased pl, neuts, TF, TLS, but last two worse if wait too long Would need to take ASA 81 mg for DVT prevention

Might it trigger ITP? A definite risk because of immune effects Might raise my IGG

Also more flare if less prior RX esp F

May not qualify for any study as I have had a HSCT Probably not, so need to take L off study

EXAM:

Largest node now 1 x 2 cm L supraclavicular

Also more numerous nodes by palpation Groin OK LS OK

Also A-Lymph-C is higher ( A-Leuk-C and % lymphs) and LDH (Kipps says too non specific to give much value) is higher so disease is recurring?

Could start Lenoladimide now but not clear yet – disease is definitely progressing, but at what rate?

Will wait three months and decide –Get BMB 1 ^st and probably CT

Need to do before disease takes off. It is indolent now.

Discussed starting now or waiting three months- It is my call.

Not keen on CAL 101 no CRs but have seen CR with Lenolalimide