Wednesday, December 22, 2010


Beta 2 microglobulin (B2M) is an inexpensive test that is a measure of tumor burden and thus helps predict how well I or any leukemia patients will do over the next few years. Actually it predicts what are odds of being alive in five years.

Mine is sneaking up . Normal is below 2.5 Mine is 2.9. This is not a huge number, but it is a jump from 2.2 when last checked a few months ago, and that is despite aggressive therapy with rituximab in the interim that should have lowered the load of cancer cells. MDACC shows decreased survival in those patients >2.5

Moreover, my trend is up. It was only 1.4 about a year ago.

My nodes are also a touch bigger, but at least the palpable ones are still mostly small. Dr Kipps didn't say they had grown, but he also didn't answer my question on how they compared to last visit in August. That is a sure sign. If he can't give me good news, he gave me no news.

My absolute lymphocyte count is now no longer below normal. It has crept back into normal range. Not a big thing in itself.

All of these are of course statistical markers for a group and of little value in predicting the future for each individual. Though I only half believe that.

There is good news, in fact great news.

My platelets are fabulous:421,000 and the rest of my CBC is good. So is my LDH, another less specific tumor marker.

None of this should set off panic alarms, but it does mean I should be prepared to act again, likely not long after my travels this winter.

It is good I am doing these wonderful trips soon. The future is uncertain.

It suggests as my friend Chaya predicted, my next action trigger will be my CLL, not my ITP. And it will be a proactive decision point. Waiting until my hand is forced is waiting too long.

My bone marrow biopsy will be in April with a CT to get the real scoop on my pesky nodes around the same time. That will be more definitive.

Likely I am reading too much into some subtle differences that don't even qualify as benchmarks for change and certainly demand no action other than monitoring.

I am in a pretty sensitized state with the two recent deaths of friends with CLL.

Maybe the direction will turn more positive with the next lab. I will be watching carefully and reading the tea leaves. Probably too intently. Perhaps I should just drink the tea.

I swear that too great a lucidity is a disease. (Doestoevsky)

Many others face much bigger, scarier and more imminent enemies and some have just recently lost the whole war and are gone.

I am still here, still noodling about this cancer. Still making plans and living life with gusto. Tears of joy, tears of grief.

As I was finishing this short note, the doorbell rang for a package delivery. When I stepped outside to greet the post woman, I looked to the west and there was the sun shining for the first time in almost a week of rain.

When I looked to the east, there was a rainbow.

Five minutes later it was gone.

Doors open, doors close.

But when the Lord gets ready, you gotta move. (Gary Davis; Fred Mcdowell)

You gotta move.



Anonymous Celeste Maia said...

Here's to drinking the tea with you!

I am not a doctor, I am not a scientist, and I want to feel things rather than measure them.

I listen to my body, if I am full of energy and feeling good, then I am fine, forget CLL.

Of course I have to monitor the CLL, but finding the balance is an individual art, just like a cure for CLL is likely to be unique for each of us.

Let us both look forward to an exciting 2011.


December 24, 2010 at 11:33 AM  
Anonymous Anonymous said...

Dr. Koffman,

Isn't there a worry about having too many CT scans? My doctor is Dr. Patel in Fullerton and she says too many can cause cancer in itself.

December 27, 2010 at 7:55 PM  
Blogger Brian Koffman said...

Too many CTs is a worry. In fact any amount of radiation is a worry, A CT should be reserved for when it will make a difference in treatment and not just to monitor diseaae.

December 27, 2010 at 10:28 PM  
Anonymous Anonymous said...

MDA loves beta2m. Mine changed by a factor-of-two in a 24 hour period using the same lab. The message being it is not the most reliable signature of CLL and should not be used as a single test for treatment or anything else for that matter.

December 29, 2010 at 3:50 PM  
Anonymous Anonymous said...

Don't know about Dr. Kipps not telling you your nodes have changed. He doesn't remember from the hundreds of patients he sees. He has to consult his notes.

At least that is what he does with me.

I wouldn't read too much into it. Maybe he didn't have your complete records from a year ago.

January 1, 2011 at 9:56 AM  

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