Sunday, August 1, 2010

How writing a helpful letter helped myself

Here's part of a letter I wrote to a friend with CLL struggling with her decision about what to do next.

The Byrd mentioned at the beginning is Dr. John Byrd out of Ohio State who so kindly and effectively helped me three years ago when I was running out of non-toxic options to treat my ITP, he suggested in a phone call that I try the combo of rituximab and cyclosporin. We have never met, but he was a life saver for me. His research is inventive and pertinent and his clinical care is compassionate and effective.
My letter gives you a sense of how I think. Writing to her about the issue of rituximab maintenance helped me sort out my own plans. That was not my intention when I wrote the letter, but that is what happened.

Is there a lesson there? You bet.


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.

You are a special person, young Nancy.

Stay strong.


Labels: ,


Anonymous Marilyn Yocum said...

"Writing to her...helped me sort out my own plans. That was not my intention when I wrote the letter, but that is what happened."

A true writer at heart, you.
You might enjoy Julia Cameron's "The Right to Write." Probably a little outside your normal reading material, but that's not always a bad thing. :-)

August 2, 2010 at 5:52 AM  
Blogger dancath said...

Hi Dr. Koffman, I have developed A.H.A. during salvage (P.C.R.) A nasty version in which I have had 7 units of blood in 3 weeks. Pentostatin was dropped in favor of H.D.M.P., cytoxin, Rutuxen. This is a Rai protocol for A.H.A. and tumor reduction at the same time, he had good results although the study had only 8 patients. Although I have only been thru 1 cycle of this I was wondering if I should suggest cyclosporin instead of H.D.M.P. Are you aware of any protocol out there that uses this?

Thanks Dan

August 2, 2010 at 2:55 PM  
Anonymous Anonymous said...

When you mentioned that writing to her helped you "sort out" your own plans, it reminded me that I often found, when writing answers to essay questions in college, that I came to a conclusion or had an idea that I never knew I had. It was kind of amazing.
I have always told students that you don't really know what you think until you try to put it in words to someone else - written or verbal. It's too bad this new generation is not focusing more on writing skills - I think it makes for clearer thinking.
Marilyn Ghysels

August 3, 2010 at 5:12 PM  
Blogger Marcia said...

I agree with what Marilyn said! It is similar to the advice I gave parents of high school math students who felt they could not help with math homework. "Ask them to explain the problem to you. Listen, ask questions about what you don't understand. As they explain, they will figure out what they need to do." Parents told me it worked every time.

August 3, 2010 at 9:27 PM  

Post a Comment

Subscribe to Post Comments [Atom]

<< Home