more Cll et al

[Guest guest]

1. For Dan Hll; you ask--what is-"Rit. mtce?". We seasoned Cllrs try to short-cut our posts to conserve time and space; so "Rit" is Rituxan; and so "mtce" is maintenance. Voila--"Rit. mtce." 2. For Kurt---you are absolutely right. In the long or short run Cll is gonna get us. My point is a lot of these Onc/Cll speialists whom we may see as on the cutting edge of new txs et al;. are hesitant to act without published large scale clinical studies on the subject of when to treat and new tx. combos such as Low.Dose Chlor.+Rit. Maybe you have not encountered this reluctance with your treating Oncs; but I have quite often in Hawaii. To me this smacks of "cover thy ass syndrome"; maybe to the detriment of some of us poor prognostic guys juggling for time, trying to dodge the chemo. bullets and extend our survival albeit briefly (hopefully longly). Just my opinion. Hal Skye. PS.. I almost wanted to post this to the Acor list; but I figured it might ruffle too many feathers.

[Guest guest]

Hal,

That's the nice thing about - you can speak your mind and won't be lynched.

Andy

-- more Cll et al

PS.. I almost wanted to post this to the Acor list; but I figured it might ruffle too many feathers.

[Guest guest]

True Hal and Andy,

This is a very open site, always has been since the beginning. Also, so is our other very open site www.cllforum.com . There is no competition there with SLL/CLL in fact most of the members here are members there. I post both places and I also take information from this site and post it there giving credit to whomever said what, I often post here information I obtain from the CLL forum.

The only place that is constricted and restricted is the Digest, for many reasons. My purpose at the moment is not to start a discussion of the digest because they are what they are, a great web site for CLL patients, but they are limited due to time and space and content of their type of reporting. They feel at the digest that they just can't allow unlimited discussion of many CLL problems and treatments etc. nor do they want to allow widespread discussion of personal items or feelings etc. That is their right and thats 'one of the reasons' I think why developed SLL/CLL.

That is also why we developed the CLLForum, to expand on the digest and to work with SLL/CLL forum and CLL Research as a friendly open place to express yourself and find unlimited information. It's hard to beat each website for their individual specialties. For example I will never stop using SLL/CLL or CLL Research or the CLL Forum, but I personally have a problem with the digest because of what you and Andy just mentioned Hal, the inability or the time to be open and available and responsive to whatever is bothering a patient.

Long live SLL/CLL website.

Kurt

--------- more Cll et al

PS.. I almost wanted to post this to the Acor list; but I figured it might ruffle too many feathers.

[Guest guest]

Hi Hal,

Seems I'm reading from the most recent to the past tonight. Anyway, I agree and I have found that most docs are not cooperative or open minded in the cover your ass syndrome. Also they are just plain not willing to open their minds many times.

To be faced with ignorance from someone so knowledgable and so trained, it truly is a mind bender.

Thanks Hal, Kurt

-------------- Original message -------------- From: "Hal Skye" <HALSKYE@...>

1. For Dan Hll; you ask--what is-"Rit. mtce?". We seasoned Cllrs try to short-cut our posts to conserve time and space; so "Rit" is Rituxan; and so "mtce" is maintenance. Voila--"Rit. mtce." 2. For Kurt---you are absolutely right. In the long or short run Cll is gonna get us. My point is a lot of these Onc/Cll speialists whom we may see as on the cutting edge of new txs et al;. are hesitant to act without published large scale clinical studies on the subject of when to treat and new tx. combos such as Low.Dose Chlor.+Rit. Maybe you have not encountered this reluctance with your treating Oncs; but I have quite often in Hawaii. To me this smacks of "cover thy ass syndrome"; maybe to the detriment of some of us poor prognostic guys juggling for time, trying to dodge the chemo. bullets and extend our survival albeit briefly (hopefully longly). Just my opinion. Hal Skye. PS.. I almost wanted t

o post this to the Acor list; but I figured it might ruffle too many feathers.

[Guest guest]

"To be faced with ignorance from someone so knowledgable and so trained, it truly is a mind bender."

Kurt,

Yes, it's a paradox, isn't it? The medical school that lays the foundation of that knowledge is the same school where pupils are taught to consider present knowledge a Holy Writ and to close their minds to new ideas unless and until the concensus bestows its blessing.

The philosopher Karl Popper said, "That which can't be questioned is not science." It's a true and very profound statement, but apparently it has never been grasped fully by establishment scientists.

Another point, no less important, is that medicine is not pure science because science deals with the universal and the general while medicine deals with individuals, every one of which is unique. Even identical twins who carry the same genes turn out to be different in important ways as they progress through life.

Andy

-- Re: more Cll et al

Hi Hal,

Seems I'm reading from the most recent to the past tonight. Anyway, I agree and I have found that most docs are not cooperative or open minded in the cover your ass syndrome. Also they are just plain not willing to open their minds many times.

To be faced with ignorance from someone so knowledgable and so trained, it truly is a mind bender.

Thanks Hal, Kurt

-------------- Original message -------------- From: "Hal Skye" <HALSKYE@...>

1. For Dan Hll; you ask--what is-"Rit. mtce?". We seasoned Cllrs try to short-cut our posts to conserve time and space; so "Rit" is Rituxan; and so "mtce" is maintenance. Voila--"Rit. mtce." 2. For Kurt---you are absolutely right. In the long or short run Cll is gonna get us. My point is a lot of these Onc/Cll speialists whom we may see as on the cutting edge of new txs et al;. are hesitant to act without published large scale clinical studies on the subject of when to treat and new tx. combos such as Low.Dose Chlor.+Rit. Maybe you have not encountered this reluctance with your treating Oncs; but I have quite often in Hawaii. To me this smacks of "cover thy ass syndrome"; maybe to the detriment of some of us poor prognostic guys juggling for time, trying to dodge the chemo. bullets and extend our survival albeit briefly (hopefully longly). Just my opinion. Hal Skye. PS.. I almost wanted t o post this to the Acor list; but I figured it might ruffle too many feathers.