Wednesday, May 27, 2009

To CT or not to CT: That is the question.

I saw Dr. Kipps for the first time in 6 months yesterday and the cold facts were good, in fact very good.

My lab remains perfect, and for the first time since transplant, my ALC is WNL. More importantly, my node exam by the meticulous Dr. Kipps and his magic fingers revealed nothing pathological. One small node in the neck was about it and it was around one cm. Nothing else found worthy of comment.

Based on my exam and routine lab, you would hard pressed to say I had CLL or had had a transplant.  Nearly four years out, and I am pretty unscathed to use the language of Dr. Rai.

Moreover the fact that my bone marrow cellularity was normal for my age at 40% told us that my blood making organ had bounced back very nicely from last year's toxic blast. My reserves may be down and may have a more difficult time rebounding from future treatments, but my marrow is doing great now.

In fact, when we look at the NOW, and what else is there to look at, it's all good. 


But Dr. Kipps had a different take on my CT report of my mesenteric lymph nodes doubling in size from 1.1 to 2.2 cm in just three months between the end of December and February.

He was incredulous. 

It doesn't fit with my healthy state and my clean as a whistle BMB.

He is another on a short but prestigious list of docs (Castro, Rai, Forman) to say that CLL doesn't come back in nodes. It likes to stop off in the BM first. Drs. Khouri and Keating might beg to differ. However, Kipps added this important caveat: the only time it relapses in the nodes is post Campath, and that sure isn't my case. And Khouri and Keating sure like their Campath.

Kipps just doesn't believe that last CT report. I told him that I had 4 different radiologist read it, and he still has his doubts.  He pontificated and I don't disagree that radiologist like to be pathologists and internist too.

Assuming these nodes have really grown (which is where I start), what the heck are they? 

Normal fluctuations? I have my doubts that normal fluctuations would have seen growth over three CTs spanning a full 6 months. But maybe.

An unknown viral culprit?  That could also explain my fatigue.  That would be more good news. Dr. Kipps believes that in that case IVIG might help my fatigue. It has a track record.

It could be telling us something worse. Post transplant lympho-proliferative disorder (PTLD)? This is the path that Dr. Furman suggested and Drs. Rai and Forman rejected out of hand. My lab work-up was negative, but that doesn't really rule it out. 

The dreaded Ritcher's transformation (RT). I am just too well for that, aren't I?

So the best way to tell according to Dr. Kipps, is to repeat the CT soon and see if they are growing. Or not.

If not, no worries. The nodes were nothing, or my vegan diet, Zeolite, digestive enzymes, and flaxseed oil has beaten them and with them any trace of my CLL into submission.

We can all relax, for a long time, G-d willing.

If yes, then the next step in a BMB to see if my CLL is still gone, gone, gone. 

If the BMB  still shows MRD-, and my nodes are still growing, that's where things get weird, and scary.

Maybe then Furman and Kipps are right. Maybe it isn't CLL in my nodes. And  many of the immuno-suppressive treatments used to treat CLL would make PTLD much worse. And wouldn't touch RT.

That means a none too easy mesenteric node biopsy because we need a sure diagnosis before we start a treatment. I am not liking the sound of this. That could lead to all kinds of risks and complications.

If both the nodes have grown and the CLL is back in the marrow, I know the story, and the story lines leads to transplant two. And I could ask myself, what advantage was served by forcing to expose my hidden cards earlier than needed in the game. Is my chance at a second CR improved? Probably, but at what cost?

Maybe that is why the wise Dr. Rai told me to tell Dr. Forman to stop with all the CT scans.

Here I am back in the usual CLL place: conflicting advice from world experts.

I think I am NOT going to think about it for awhile and wait to see if a light goes on or my hand is forced.

The best advice I got from Dr. Kipps, and we can all agree on this one:

Don't do anything stupid.

For me, that means sitting on my hands for awhile.

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Blogger Mikha'el said...

After reading your report of the latest, I love the end note of "don't do anything stupid". I am learning more and more about differing opinions from the experts and how we need a "expert" of the experts to make the final call. Not sure that exists as it often comes down to sitting still and finding the answer lies inside. As always, best of everything to you in everyday life, the decisions, and living, that must go on.

May 28, 2009 at 5:41 AM  
Blogger Unknown said...

HI Brian

It is so very very hard to decide what to do. How do you/anyone pick the best path to follow and you have the benefit of understanding all that the doctors say to you. Maybe that makes it harder, I don't know. I just hope that the CLL is non-existent and that your next moves become clear.
Chag Sameach from London

May 28, 2009 at 7:28 AM  
Blogger Judy Cleri said...

Dear Dr. K,

Ok first.....WHOO HOO......after all is said and done, I think that the report is a very good one. I think I really like this Dr. Kipps....if you remember, even you told me one time that a radiologist job is to question everything....Heck at one point in time I was on death's door step by my PET Scan and Bone Scan to find out it was not cancer, just that stupid Sarcoidosis......X-rays and scans can be soooooooooooo misleading. So I agree, don't do anything stupid......sit back and enjoy the good news. Worrying and planning will do no good, and it sure as heck won't change things.

Well, I just want you to know that you made my day with this bright news. Sometimes you pray and pray and never hear any good news. Today a number of my prayers were answered for you. Now, if we can get the one for total and complete healing taken care of.....WOW.... how awesome would that be?

Lots and lots of prayers still coming your way. Can hardly wait to see you back in DB where you belong.

Now the question of the day......Penquins or Wings?



May 28, 2009 at 2:10 PM  
Anonymous Anonymous said...

Perhaps a PET/CT scan is in order. It would put your mind at ease; that is the most likely case.

May 28, 2009 at 11:39 PM  
Blogger LoveLife said...

Don't do anything stupid. I love it!
Love it!

I won t do anything stupid too.
I will wait until I have a little bit of hair and I will just enjoy the summer, maybe even the wedding

What enzymes are you taking, Brian?

May 29, 2009 at 5:06 PM  
Anonymous Anonymous said...

Hi Brian, saw you on the bmt list, thought of you when I saw this article


June 1, 2009 at 1:40 PM  

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