Questionable Online Advice from a Physician about CLL

[bkoffman]

Friends,

I just posted on my blog (bkoffman.blogspot.com ) about some very questionable advice from a syndicated medical doctor about CLL/SLL: if the disease is mostly in the lymph nodes, then radiation treatment usually is used, even in asymptomatic early disease.

Wait a minute! Where is that in any guideline?

It is dangerous misinformation such as this that reenforces the need for trusted patient forums such as here and reliable vetted websites dedicated to CLL such as our newly launched cllsociety.org.

It is why we need to get second opinions when we get a sense that something might be wrong.

It is why we need to be our own best advocates.

Stay strong.

We are all in this together.

Brian

cllsociety.org

[stunned]

Lets hope someone , somewhere, with powers needed to rid us of these "quacks", picks up on this and does something about it.

We have enough to worry about and we rely so much on the information and advice given to us by those who supposedly know so much more than we do about our illness.

To now have to worry about whether or not what we are being told is correct, is just not what we need or deserve.

Thanks for raising this.

Anne xxx

[Chrisfer in reply to stunned]

Take it as a given, unfortunately but we all need to be as self educated as possible in order to avoid the long term worsening of our condition. My motto is to question all advice, get second, third opinions and read as much as possible before committing our bodies to the medical profession. Stay well everyone!

[Cllcanada Top Poster CURE Hero]

Obvious this doctor is incorrect... no question.

However there is a case to be made for the use of radiotherapy in very early stage SLL where there is only a single node or a single node cluster involved...

As Dr. Hamblin pointed out in 2010, it can be potentially curative... in a very select group of SLL patients...

mutated-unmuated.blogspot.c...

Also see Dr. Hamblin on Chaya's site

updates.clltopics.org/1993-...

As always the devil is in the details.

~chris

[bkoffman CLL CURE Hero in reply to Cllcanada]

I have revised the text to reflect that a cluster of nodes can be treated similar to a single node and added some nuance to my post. The idea to radiate Stage 1 disease is mostly based on the experience with other lymphomas. There is one small retrospective SLL study from 1989 long before we were looking for prognosis indicators. It is not universally accepted, nor part of any guidelines, but I appreciate you pointing it out and I never would discount the opinion of Dr. Rai in Up-to Date or Dr. Hamblin or Chaya. I wonder how these experts would feel today.

[Ernest2]

And great to see the new website.

Ernest.