Raw Data from seeing Dr. Kipps and starting lenolidamide
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)
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
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