Sunday, August 29, 2010

Philip Roth on weakness in friends

Philip Roth said in his 2008 book, Indignation, speaking through the voice of a Jewish mother to her troubled 19 year old son, cautioning him against his choice of a troubled girlfriend:

"Because other people's weakness can destroy you just as much as their strength can. Weak people are not harmless. Their weakness can be their strength."

Ouch. Ain't that the hard truth.

Compassion? Yes.

Counsel and help? Of course.

Putting my own heart and soul at risk? As long as I know the risks and am willing to take the chance on being pulled under in my attempt to save the one who is drowning.

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Thursday, August 19, 2010

Photo from my curly hair days

This picture was taken after my hair grew back and before my 1st haircut post transplant.

This is just a mock up for CME sponsored by PCE and PCN with whom I am proud to be associated. They are using my picture as a place holder in a trial to rework the web site. They have much better looking and famous speakers to populate their real home page, but I like my 15 minutes of fame.

If you want their real websites go to or Their conferences are simply the best for primary care providers. Practical, patient oriented, balanced, and up to the minute.

I will be lecturing for PCE on anemia in the elderly and including MDS (myelodysplastic syndromes) with Dr Steensma from Mayo and now Harvard. My job will be to keep it real and practical in a complicated topic with which I hope never to have any personal experience. It is of particular interest to me that the drug that may revolutionize the treatment of MDS is the same new best friend for us with CLL, lenalidomide (Revlimid).

I am at the infusion center, patiently waiting for my IVIG and lab tests to get going. The usual spark plug, Ginger, who gets the process rolling is on vacation, so I still am able to easily type with two hands until the IV gets started.

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Tuesday, August 17, 2010

Good news

I saw Kipps today. Platelets were 367,000 so they are climbing almost 2 weeks post IVIG and the rest of the lab is also good. Kidney function has been hit a touch by the cyclosporine (CSP), but is still well within the normal range. Blood pressure, also a concern with cyclosporine, was good too. And very importantly, no growth of the palpable nodes.

My last rituximab was July 8, so it has been 5 weeks.

This is the best news I could hope for

The question is what to do next and when to do it.

I will be scheduling a bone marrow biopsy soon that will help determine the plan.

I am planning a busy fall, so I hope to maintain the status quo for a long long time.


Monday, August 16, 2010

Where I go when I'm not here

There are many reasons I disappear from the blogosphere for days at a time.

The first is that I am swamped with other writing and editing with due dates and time lines - mostly medical, and occasionally related to leukemia, and have no wisdom or beaux mots left to share for my own projects.

The second is that I am awash with life- kids, patients, friends, plans, music, others with CLL, air hockey. My energy is easily sapped.

Remember my middle name is Tired and I am much slower since my CLL diagnosis.

The third is that I have nothing new to share. Writing is hard enough with pressing issues, but with nada to report it is by definition an empty effort. "It is a tale... full of sound and fury signifying nothing" but Macbeth already nailed that one.

Another is that I have gone fishing - well actually more likely hiking and sight seeing and my internet connection is blissfully crappy. But the trees are green and the air is sweet.

A rarer cause is that my news is bad, and I am waiting like the president's press secretary to give it the right spin before I blast it out on its irretrievable one way journey into the ether.

And sometimes. not often, but not never, I just don't feel like writing. It is more than fatigue- more like ennui - looking for meaning in all the wrong places. And while I feel it is my G-d given option to despair, it is never right to inflict my black mood on others, unless you can do it with wit and humor and grace, as does Woody Allen at his best. And if I can do that, I am half way out of the hole

Most often I am just lazy or hungry or sleepy or or distracted or gone.

So when I am not here, don't fret. Imagine me writing up a storm on anemia or obstructive sleep apnea, or picture me hiking on the John Muir trail in the high Sierra or more likely, taking a long nap.

My latest disappearance was due to a lovely trip to Mammoth Lakes and Yosemite with challenging glacier paced internet connections, but also with wonder filled glacier carved cliffs and forests and meadows and rivers and waterfalls and lakes and skies and ghost towns.

There have been a few minor twists in my lab that are starting to look like nothing. No sinister trends. No dark clouds.

Last platelet count was a robust 348,000 just before I left town, and I see Kipps tomorrow.

It is all good, except for all the non blog writing I need to do.


Wednesday, August 4, 2010

As it Happens

Live from the Virginia Crosson K. Cancer Center.

Real time sharing through Twitter and Facebook are de rigueur for the hipsters today. I prefer to use my blog.

This instant connectivity offers up an unvarnished, unfiltered, direct communal experience with no commentary, no spin, no insights, no imaginings.

Happening at a laptop near you.

Taking the electron machine out of the loop my BP was 120/82 which is great. Much better than it has been. The RN took it about four minutes ago the old fashion way, pumping up the cuff, and listening for the change in the sounds of my pulse with her stethoscope.

So why the terrible headache last night - clearly not from my BP being sky high. I should know better than to scare myself like that. More likely it was a skipped meal and a busy day with too little sleep the night before.

Now I am waiting for my all important CBC and platelet count. The results should arrive any minute.

The metabolic panel, uric acid, and trough cyclosporin level won't be known for a day or two.

And the answer is.........


WBC 6.o
RBC 4.27
Platelets 309

Wonderfully normal. Shared while the ink from the printed report is still wet.

How real and immediate is that.

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Tuesday, August 3, 2010

Dear Dan


Please email at and I will try to respond more personally.

Please remember when you comment on my blog, I have NO way to get back to you personally if you don't supply an email. That's why I include mine.

For those who have no idea what this is all about, please read Dan's comment after my prior post.

Dr. Rai's treatment is a mix of three string drugs, all known to have the potential to help both CLL and AHA, so it makes good sense in your case. When you say "salvage therapy" it suggests a need for some heavy lifting to clean out a big tumor burden.

Cyclosporin (CSP) has a very weak record in treating CLL (just some case reports and contradictory in vitro results), and sweet smelling rituximab (R) is the same sweet smelling rituximab in both protocols.

That said it, this much less potent combo of CSP and R than the Rai protocol worked like a champ for me in both controlling my CLL and ITP.

HDMP is a whole other treatment, pioneered by Dr. Kipps.

Dr Rai has a lot of wisdom and experience. I would be tempted to follow his lead.

Like I said, drop me an email and we can take this further.

Stay strong


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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.


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