Friday, February 5, 2010

Aggressive versus gentle Survey

I am not sure how many of you read all the comments on my posts. There is often lively debate. For those not in the habit of clicking the comment link at the bottom of each post, I have pulled these two dueling views of how to handle CLL.

Where do you come down? Not in general. Not for any case, but for my case. As Levinas taught about morality, and any good hematologist will confide, all cases are unique and all responses to be fully realized must be tailored.

Do you prefer the gentle "buy some time" approach of the last commentator trying to avoid unforeseen consequences and collateral damage, but risking mounting an effete response or worse offering appeasement of a malicious enemy?

Others have been more extreme, urging me to find ways to co-exist with my malignant clone. Friends have urged me find a place of harmony. Believe me I am on my way, if only such a place existed.

Are you more prone to the blunt assessment of mkali that you must fight fire with fire? Kill or be killed. Do you believe, that at the end of the day, either I get rid or the CLL or it gets rid of me?

Read their comments below and then please take my survey . Remember I am not talking about some sweet "good cancer" CLL in some octogenarian. I am talking about me, a hungry for life 58 year old with what in the past has been a pretty nasty CLL associated with scary low platelets, though since the transplant, it has been a kinder gentler CLL.

Let me also reassure you that your votes will of course not determine my decision, so vote with no need to feel responsible for me, but only for yourself. That is really the purpose, to help you reveal and understand your own tendencies, and also to see how the community splits up. Even if you are not a CLLer, force yourself to vote. You may learn something about yourself.


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.

thanks
mkali

February 2, 2010 6:37 PM

Delete

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.

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3 Comments:

Blogger Marcia said...

Well, I don't see a survey, but my vote is for the gentle route...

However, I'm heading to FCR next month. Doesn't sound like I'm very consistent... I've just had some very bad experience with long term prednisone, and I don't have the energy, time or a companion to go for more consults... I have to work to keep my health insurance.

One way or the other I guess I'm trusting in a merciful G-d...

February 6, 2010 at 9:58 AM  
Anonymous Anonymous said...

As I've said, I (and an increasing number of other patients) don't like FCR. It doesn't result in a cure, everyone relapses, and the risk of Richter's and myelodysplastic syndrome (neither of which has cures and, in the case of Richter's, gives you 6 months average survival (!)).

The pace of research into CLL is furious. Personally, I like the HDMP+R or R&R which can give you nice, gentle remissions. However, research facilities such as UC San Diego, MD Anderson and other routinely-mentioned places, are the ones to consider for treatment with 'experimental' regimes.

I know I'll take some heat for this, but at least get a consultation with a top CLL expert. MD Anderson is stupidly expensive, but places such as UCSD or OSU or Long Island Jewish would give you a quote over the phone for a simple consultation. Even out-of-pocket, the prices can be reasonable.

It's your life, so be sure this is what you want to do.

In this layperson's opinion.

Barry

February 8, 2010 at 9:36 AM  
Blogger Brian Koffman said...

Barry,
I agree that having a CLL expert as the lead on your team is a critical in living a long time with this disease.
I have formally consulted Kipps, Rai, Furman, Miller, and Forman, all experts in either CLL or transplants. I will be seeing Miklos next month, Informally, I have seen or spoken with Byrd, Kay, Flynn, Keating, Khouri, and Wierda at medical conference or over green tea.
Not sure what another expert would add except more confusion
Thanks for your passion and advice that I do agree with overall.
Brian

February 8, 2010 at 5:01 PM  

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