Tuesday, April 27, 2010

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


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

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Blogger Judy Cleri said...

I'm sure glad you understand all this, because thank goodness I don't!

Sorry about your Kings......looks like my Ducks may retain the title of only California team to hold cup!



April 28, 2010 at 9:25 AM  
Anonymous Anonymous said...

Len-Humax is being taken now by a fellow CLL-blogger, David Arenson, who posts here http://clldiary.blogspot.com
Down on the sidebar, there is a list of topics of which len has 5 posts of note.

April 28, 2010 at 11:13 AM  
Blogger Barry B. said...

I'm guessing you were passing time in the bamboo court. The last time I was in there (April 19 or so) I froze my rear end off. I've given myself a few Neulasta shots in that courtyard.

Revlimid and rituximab is 'increasingly being used' for CLL by Kipps and associates, is what I've heard. Trial or not is not important, unless there are money issues. I'd trust Kipps to do the right thing. He's not infallible (he thinks the radiation in an abdominal CT scan is the same as flying from LA to NY. Not close, Dr. Kipps), but I trust him, or I wouldn't go there.

Life is risk. I'd do the R&R if he is recommending that; results have been good.

As far as CAL-101, you'd have to go elsewhere for that, because the last time I've checked, they don't offer it in San Diego.

I like what I hear about CAL-101. So there are no complete remissions. If you have a long-lasting complete remission, or you can repeat the treatment with good results, when you relapse, it's a good option.

I'd say better than a transplant.

Has Dr. Kipps ever commented on your decision to have a transplant so early in the disease?

It doesn't sound as though you're interested in flavopiridol. It has some side effects, mainly diarrhea, but it can work very well, and responders can respond again if/when they relapse.

It's a pain in the rear (so to speak), but some of us have few options.

Did Kipps discuss CAL-101? What's his opinion of the drug, if any.

May 1, 2010 at 7:30 PM  
Anonymous Anonymous said...

I wanted to start a trial at Princess Margaret Hospital in Toronto for lenolidamide but was not a candidate because I had already had chemo.
So now will go to Southlake Regional Cancer Centre in Newmarket where there is a trial for FC + Arzerra. Hope the trial is still open.
Irving Noble, Toronto

May 24, 2010 at 8:04 AM  

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