Saturday, July 11, 2009

Of nodes and scans and things

Next month I have my first CT in nearly 6 months to check my deep mesenteric nodes. 

My lab and my palpable nodes remain unremarkable. I don't want any remarks, thank you very much.

Those who have ridden shotgun with through this wild adventure will remember that not just the timing but the need for another CT scan was a matter of some debate. 

My compromise between those advising never and those advising ASAP was August.

There is much to be learned from what these shadows will reveal. Like a palm reading, only with  xray eyes and a digital brain, it will see my future.

If my nodes are the same (Even this is tricky. Just what are we talking about here? Is 2.4 cm the same as the present 2.2 cm? Probably, because mesenteric nodes twist and turn. It is the gut after all. But what about 2.6 cm?  2.8?  Do I draw the line at 3 cm? What constitutes intestinal fortitude? What is an acceptable variation and what is obvious appeasement of a malignant process?) or if they are smaller, my choice is simple. Celebrate big time, and continue all my weirdness with diet and supplements.

If it is definitely larger, say 5 cm, then watch and wait is over, and I must decide on my next move. More on that later, but first I would probably eat a good cooked meal- still vegan of course.

If there is clear growth, but not much, say the nodes are now 3.2 cm or there are clearly more of them, then things are even more confusing. Lenolidimide (Revlimid) might make a lot of sense, perhaps the R&R trial (rituxan and revlimid) like my friend Robert.

Or I could do nothing and wait and repeat the drama in  another 3 or 6 months. Or I could start FCR or PCR or FCH or the NK study or so on to a nearly infinite set of combinations. Not that I am complaining. It is good to have options.

A bone marrow biopsy (BMB) must precede any treatment plan, as there is already some strangeness to my status: clean bone marrow and blood, and nodes only in one site. Smells a bit like a lymphoma, doesn't it? But I am not sick and most patients with Ritcher's Transformation are not well. Au contraire. I am getting stronger all the time.  Here's where things get even stranger and counterintuitive. If my BMB shows a touch of CLL, that might be actually reassuring, If my nodes are growing and there is still no CLL in my marrow by 4 color flow, do I need a node biopsy to check for transformation? Dr. Kipps has already broached the subject. Not a pleasant or easy path as the biopsy would have to be one of the suspect nodes, deep in my belly.

I haven't even touched on the issue of my premeds for the CT scan, as the prescribed steroids could artificially shrink the nodes and critically distort the results. That internal debate can wait.

Enough noodling for today.



Blogger pkenn said...

Brian - While I often wish I understood CLL better, when I read your "brain chatter" caused by the fact that you are so educated about the disease I think I'm better off, in some ways, not knowing enough to go there. I hope you find some peace while waiting for your August date with the CT machine that may or may not give you the information you want! I've never heard of steroids being used as a pre-med for scans. What is the reason for their use?


July 12, 2009 at 1:41 PM  
Blogger Marcia said...

I echo Pat's question about steroids. My waiting is similar to yours, but I know the CLL is still there... I just don't know how big those internal nodes are. I feel more bloated, so I suspect they are growing...
Enjoy your time until August -- I think I'm going to schedule and then forget everything until the date of the scan...
Marcia (IN)

July 12, 2009 at 10:19 PM  
Blogger TomD said...

As I have a presentation involving deep abdominal nodes, I am more than interested in your comment about premeds for CT scans. The only think I get is some contrast agent: never steroids. Please comment further.

July 13, 2009 at 11:01 AM  

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