Monday, February 1, 2010

Why can't we all get along?

When I consulted the concerned and compassionate Dr. Kipps, he used all his wisdom to urge me not to have a second transplant. My wife says he was practically begging me not to go down a road he sees as fraught with unneeded and unpredictable dangers.

Will my bone marrow bounce back as quickly a second time, especially as the experienced Dr. Forman wants to hit me harder this time? Or as the clever Dr. Miklos does in Stanford, do I want to radiate nodes whose DNA is already scrambled?

Here's a scary one.

Are we sure that the reason I rejected the graft was all host issues? Are we certain it was my lack of FRC induction and lack of ATG in the conditioning protocol? Do we know that I rejected the graft because my T cells weren't soften up enough? Dr. Miklos has raised the clarion call that I would be much better served by a different donor in a round two. Dr. Kipps is on his side. He bets that I have antibodies against my first donor. There is no test for this.

This is an irreconcilable with Dr. Forman. There is no grey zone. The point may be moot. If I have a second 12 out of 12 donor match, why not go for it, but if not, and I choose the transplant route, the kind and generous Yaakov, my Israeli donor, is my only hope. Would Dr. Forman, who knows me and my HLA the best, even bother to redo the search? My second choice donor two years ago was not a good match.

Help. No way to get an answer on this one.

Should I rush into such a murky mess? Methinks not.

Fortunately, my CLL is behaving in a gentlemanly fashion these days, not being too pushy or poking into places that it is not welcome. No change in my nodes for 3 months, and a stable CBC for the most part since August. As long as I get my IVIG every fortnight that is.

Even my ITP is being less spooky. The biweekly infusions are protecting my platelets and Kipps argues that I have many options yet short of chemo, let alone a transplant. Prednisone, Danazol, Rituximab, cyclosporine A, and the new platelets growth factors mimetics. If those don't work, hit the CLL .

The bone marrow biopsy next week may be important after all. If my disease has progressed from 2.8% to say 50%, the writing is on the wall, in blood. The decision is not if, but how and and how soon to do the transplant.

If my biopsy shows, say 5% monoclonal B cell monsters, I can dally, smell the roses, and wait for the CLL geniuses to get better at keeping me alive whichever path I take.

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Anonymous Anonymous said...

Hi Brian,

Doctors like Kipps and Hamblin are big advocates of palliative care (like chloromobucil and vaccine therapy), it is suitable for patients > 70 years so these treatments could buy them 6 to 7 years but for younger patients who have 20 to 25 years can not use diverse toxic chemotherapies and after 6 to 7 years they will not be in a position to sustain the rigours of transplant with many comorbidities plus they will not get CR with any therapy resulting in transplant relapse in future.


February 2, 2010 at 6:37 PM  
Blogger Judy Cleri said...

5% monoclonal B cell..............HUM.....not sure what it is, but I'mwith you on this one....lets pray for 5%.....

Maybe they will get lost on the way to understanding my maps!

have a great week.........


February 3, 2010 at 2:23 PM  
Blogger pkenn said...

Hoping that your BMB will show low numbers and you can take a simple path for a change while, as you say, the gurus figure out how to fix all of us with simpler solutions!

February 3, 2010 at 7:06 PM  
Anonymous Anonymous said...

For gosh sakes, man! Dr. Kipps is one of the top CLL experts in the world! He has forgotten more about CLL than you or I (combined) will every know!

He is getting excellent results using HDMP+R, R&R, and other treatments.

I've been following your blog since you started it. We share the 'wonderful' 11q del; I developed mine over time.

I questioned your decision to go for the 'big guns' right off the bat, but never said anything to you, since none of us needs to be questioned about treatment decisions already made.

I personally would not get a transplant unless I had no other option. Even then, I might not. I've heard too many horror stories.

You should consider that 'heavy' treatment that mkali seems to prefer can further damage your immune system, increase the risk of secondary malignancies, and put you into a place from which you will have a hard time recovering.

It is my opinion (obviously) that you should listen to Dr. Kipps. No disrespect to your doctor, but how many papers has he published on CLL?

As far as mkali stating that Dr. Kipps is 'big on palliative care', he or she is full of it. What makes him/her an expert?

Dr. Kipps is a conservative treater, and not like the folks at MD Anderson, who will give you FCR, regardless of the fact that it will give 10% of the people MDS and another 10% of the people Richter's transformation. They never mention that.

I think Dr. Kipps wants to keep you alive until better treatments come down the pike.

I'd listen to Kipps.

But, it's up to you.

February 5, 2010 at 8:09 PM  

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