Sunday, August 29, 2010
Thursday, August 19, 2010
Photo from my curly hair days
Tuesday, August 17, 2010
Labels: ITP. good news
Monday, August 16, 2010
Where I go when I'm not here
Wednesday, August 4, 2010
As it Happens
Tuesday, August 3, 2010
Sunday, August 1, 2010
How writing a helpful letter helped myself
Very nice post about the good and bad with CLL. I agree with the mob. Get a CLL guru's opinion, and Byrd is one of the best.
Here's my 2 cents worth.
CLL is not FL (follicilar lymphoma) or even NFL (non-follicular lymphoma) so maintenance R (rituximab) is more a risk and here is why.
1: CLL unlike lymphomas is more in the marrow and R is often lousy for cleaning out the marrow on its own.So you think you are doing great with shrunken palpable doses, but the cancer is partying in the BM and the internal nodes. Though pleasant, this delusion may lead to more difficult treatment options down the line.
2: CLL patients are more immunosuppressed than lymphoma patients and R dampens the already weak immune system, by wiping out good B cells, changing the balance and signaling in the T cells, and plummeting the levels of antibody, and may even lead to late onset neutropenia (LAN) exactly what you don't need.
3: You can develop an allergy to it (mouse juice) like PC, though ofatuzamab is the solution to that issue
4: it can stop working and won't be there if you really need it, and finally you may be taking more of something that you don't need with all the risks, and should instead save it to use on as needed basis.
That said, there is some weak evidence in favor of R maintenance. A 2009 ASH abstract by Pieto used maintenance therapy with four monthly cycles of rtx at 375 mg/sqm followed by twelve monthly low doses of rtx (150 mg/sqm) (a very low dose) " CLL pts undergoing consolidation and maintenance therapy (n=54) showed a longer response duration vs MRD+ not consolidated pts (n=16; 75% vs 9% at 4 years; P<0.00001,>1 year) pts (n=43) showed a very long response duration (79% at 6 years, Figure). Moreover, OS was shorter in MRD+ not consolidated pts (0% vs 79% at 15 years; P=0.0007). Noteworthy, within the high risk subset (n=48), consolidated pts (n=17) showed a longer response duration (56% vs 0% at 2.5 years, P=0.003) vs MRD+ not
consolidated pts (n=11). A paper by Scrock uses 100mg/M2 q 4 weeks an even lower dose x 6 months with some success in a very few patients. Finally Ken Foon used R maintenance in his FRC lite protocol. It is pretty thin data, but it is not nothing. It is all I could find when I researched the topic.
You see I am facing a similar decision. The good thing about this list is that we are in this together. R + cyclosporin (CSP) has worked so well for ITP again and 3 years ago took my marrow from 90 to 3% I wondered with Drs. Kipps & Forman if I should stay on the R along with the CSP. I think we will let the BM guide us. If the 6 weeks of R used ostensively to control my ITP has cleaned out my marrow, then it argues in favor of maintenance. If not, then it is a cosmetic therapy shrinking palpable nodes, but the disease is progressing and I am wasting a good tool..
Maybe you should get a BM biopsy before deciding. Best to wait 8 weeks after the last dose of R due to its long half life of activity Hope this helps.