Saturday, June 26, 2010

An update

I have been feeling OK, though my WBC is still very low, and my hemoglobin and platelets are below normal.

I suspect that there is something awry with my stem cells. They are not producing enough of most everything. This is called marrow failure, which is a term that describes what is obviously happening, but explains nothing beyond that. Little is known about marrow failure, except causes. Radiation is one big killer of blood-forming stem cells (hematopoietic stem cells), chemical poisons are another. A third cause is...chemotherapy! In other words, FCR.

It is possible this would have occurred on its own, since CLL allows more cancers to grow unabated. But since my counts crashed on the fourth cycle of that toxic regime, it's definitely linked to FCR.

Folks, please think about avoiding FCR if you can. Reserve it for when you have relapsed and are looking at a stem cell transplant. The combination of the 'F' and the 'C' (fludarabine and cyclophosphamide (cytoxan)) apparently are a potent producer of marrow failure, aplastic anemia and myelodysplastic syndrome (MDS). All of these are killers (six months to two years). Knowledge of these cancers is about where CLL was in 1995. It's terrible.

There are many other options out there. I made a serious mistake, being encouraged to try it by MD Anderson and seduced by the high complete remission data, etc. But everyone eventually fails FCR, and then the prognosis is 'grim'. Learn from my lesson.

Meanwhile, Dr. Kipps has been silent. I've been sending my blood numbers to them down in San Diego, but I've not heard anything. I am going to be prepared for an MDS diagnosis by making an appointment to see a doc at Stanford, where they have an MDS center, and a robust (as far as I know) stem cell transplant center.


Anonymous said...

Your comments do not make developed cytopenias after HDMP+R, long before you ever had FCR.

One could argue whether or not FCR should have been given in light of this scenario, BUT your cytopenias Preceded the FCR...try to be objective and less bitter.

Brian Koffman said...

Don't take Kipps lack of response too personally. He is often out of country. That is why I have found I need a local oncologist to handle any crisis

Barry B. said...

My white blood count was always elevated until I did FCR. The counts ranged from 15,000 when I was diagnosed in 1998, to 250,000 around the time of my treatment with ISF-35 (Memgen) in 2008. After the third cycle of FCR, my WBC hit 900. It has never recovered.

The local onc doc discontinued the FCR because of the terrible hit it took on my numbers.

I suppose you would argue it's just a mere coincidence. Poppycock. No one believes that. Dr. Kipps and every other doc I see has concluded that FCR has damaged my bone marrow.

But I suppose you know more about CLL than those 'mere mortals'.

Of course my comments 'make sense'. I do find it interesting that you are ridiculing me for my personal experience, Mr. Anonymous. You have no idea how I feel, my blood counts beyond what I have discussed here, or what my state of health is.

FCR increases the risk for Richter's transformation (no cure, six month survival) and MDS (no cure, six months to two year survival).

With a plethora of other options out there, you can't tell me FCR is a rational choice for CLL. That is not true. UCSD is 'moving away from FCR' is what they told me to my face (of course this is after my FCR treatment).

Learn from my sad experience. Avoid FCR.

(The exception would be, of course, if you have no other option, or if you are going for a transplant. Then there may be few, if any, options.)

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