Sunday, November 29, 2009

Forget the alligators, let's drain the swamp

What follows is my handwringing over my next move.

For those with CLL or ITP or transplants or anything similar, you might want to dive in.

For those who have other fights to fight, but not these one. you might want to skim the surface, as the twists and turns assume a knowledge of, or at least an interest in the arcane and creepy crevices probed by the hematologists.

I am slowly moving into these murky vermin filled waters, but I have no choice. Don't worry. With awareness and some luck, I will emerge with all my fingers and a happy healthy mix of blood cells in my veins.

For some time, I have avoided confronting my options or as my dyslexic fingers would say potions, but the time is approaching to come face to face with my future.

To be proactive, rather than reactive necessitates anticipation of the sound of the other shoe dropping, even if I want to plug my ears or turn up the stereo.

Despite the great recent news about my platelets, sooner or later, I will need more treatment.

Likely sooner.

Likely steroids.

And when I start them, I will be on them for months because of the necessarily slow and gentle taper.

So why not skip that toxic and admittedly interim step, and jump right away to an even more toxic, but definite step.

Why not? Because it pushes the sea change decision up. Steroid will buy me time, not a bad thing, and I may have no choice if the IVIG loses its gusto while I am busy cogitating and lining up my ducks.

The argument against prednisone works like this:

Forget the alligators, let's drain the swamp.

Forget my ITP, as Dr. Hamblin counsels, let's treat my CLL, the underlying cause of the dysfunctional autoimmunity gobbling up my platelets.

That evil clone already may be sneaking back. It's gone from being invisible to showing up uninvited as enlarging nodes and a measurable but still tiny percent of my marrow.

The first question should be: Do I really need to hit the CLL or can I just knock back the ITP independently? In other words, do I really need to drain the swamp, or can I shoot enough gators to scare the rest into a long retreat?

I deeply respect Dr. Hamblin, but there is an argument made by Dr. Kipps and others to fight one battle at a time, in other words, control the platelets, then worry about the leukemia. Put off the more toxic treatments as long as possible. Make sense.

Friends have done that with great success, but their CLL was in deep remission.

My past story is muddied by the fact that my last durable successful anti ITP therapy, namely Cyclosporin A and Rituximab also had a profound anti-leukemic effect, so it is impossible to say what was the magic: the immunosuppression or the cancer suppression of the drug combo.

It is additionally confusing to ponder that my ITP is back with such a low disease burden (2.8% of the bone marrow), but that can happen in CLL. Last time my bone marrow was packed with 90% CLL when the ITP hit, and stayed gone even when the cancer clone had climbed back from 3% to 25% of the marrow prior to transplant. Go figure.

Maybe a repeat bone marrow biopsy (BMB) would help guide therapy. It's been more than three months since the last one. If my biopsy shows stable disease, or by a miracle, regression, (why not, I am vegan after all) that would certainly give pause to any aggressive cancer directed therapies. If it shows clear growth, then my choices become clearer. CLL tends to be a charging fullback. It doesn't often stop unless it tackled and pulled down to its knees. There are exceptions, but counting on it losing steam on its own or better yet being a wrong way runner, is an eternal source of hope and the direction of all prayers, but it is hardly a guaranteed winning strategy. True, the transplant may have significantly slowed its speed, but a BMB will tell me that too.

There are disadvantages to having Dr. Forman do my BMB, as the results between the labs at UCSD and City of Hope (CoH) are not strictly comparable, but if the results are that fuzzy, that suggests little change over the 4 months or more that will have elapsed between procedures. That will be good news.

There are significant advantages to letting Dr. F. have the next jab at my ilium.

My next transplant will likely be at (CoH). The decision to pull that tidal trigger is Dr. Forman's. The more confidence he has in the data to make the decision, and the more immediate the results are, the easier it will be for him to make the call. The impact of seeing my results in a fax from Kipps will be less impactful then having them show up on his computer screen at work. Believe me, I know from my own experience, there is more ownership of the tests I order on my patients than those ordered by outside docs.

I have to think of these things.

Are any of you still with me?

This is all a prelude to deciding the next BIG step.

I will continue this tomorrow.

It helps me enormously to do this dance in public. Thank you for watching.

Comments are welcome.



Anonymous Marilyn said...

To answer one of your questions...yes, still with you. Keep writing

November 30, 2009 at 4:21 AM  
Blogger Dragon Slayer said...

I know the dance. Also know that waiting is a tough thing to do, I'm sure your mind goes to each option a lot during your day. Seems that the disease is ready to make a call. Wait for it to make it's move, I'm sure when it does, you'll know what to do. It's just a stranger lurking in the bushes still-when it jumps out, you'll have a full arsenal to use against it, just don't use all the bullets trying to hit it now, you may miss.

November 30, 2009 at 7:45 AM  
Anonymous Anonymous said...

I would check with Dr. Forman to see if he has any objection to the BMB being done at UCSD, which, if I recall is the last one you had. I myself favor large academic institutions for some of these tests simply because of the volume done there. I say this without having much knowledge of CoH.

November 30, 2009 at 11:36 AM  
Blogger Alison said...

Sounds hard; I'll keep reading and listening to you.

November 30, 2009 at 6:22 PM  

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