See a CLL Specialist

[SouthFloridaLady]

cllsociety.org/newsletter/q...

Roslyn~

[Justasheet1]

Ros,

What a scary but poignant story.

Jeff

[ballyhoo]

Very good information, Thank you. Hoping you get your A/C back it's hot down here. Best wishes to you and all.

[bkoffman CLL CURE Hero]

A leeson to the wise. Thanks to Terry for sharing it,

[Bubnojay]

Thanks Roslyn,

This must be a recommended read for those who have yet to find a cll specialist and are concerned that their GP does not understand Cll and makes light of their symptoms, especially fatigue.

Bubnjay1

[JaniaCo]

This is very helpful. In March I was diagnosed with hemolytic anemia (Cold Agglutinin Disease) before I was diagnosed with very early CLL. I'm on watch and wait, but thanks to you I realize I should see a specialist instead of taking the chance my CLL could progress suddenly.

[SouthFloridaLady in reply to JaniaCo]

Read my profile for a shocker.

[AussieNeil Administrator in reply to SouthFloridaLady]

I expect that you appreciate now the reason for delaying treatment until absolutely necessary, namely that given CLL is incurable and will eventually return after treatment, the best option to maintain quality of life is to defer treatment. Watch and Wait was determined to be the best option many years ago by studies that determined that life expectancy was the same whether patients were treated or not. Treatment comes with its own risks and side effects; why face these until they are offset by treatment's benefits.

Some specialists suspect we are approaching the point where earlier treatment may be the better option, but I think we need an improvement in prediction capability regarding which treatment best suits a given patient and how well they will do on that treatment before W & W becomes the exception rather than the rule.

Neil

[Justasheet1 in reply to AussieNeil]

Neil,

There is such a fine line between W&W and needing tx.

Some people start too soon and many too late.

That's why everyone needs a 2nd opinion from a specialist as you've said here many times.

Jeff

[AussieNeil Administrator in reply to Justasheet1]

Exactly Jeff. As with any skill, people (specialists) get better at it the more practice and experience they have.

[shoshanaz]

Trying to find a CLL specialist in the Baltimore/Washington region is challenging. The NIH is here, but unless/until one is in a study, I'm not sure that helps. Some of the lists online are pretty outdated (esp. in terms of actually getting appointments.) I like my current hematologist, and think he knows his stuff, but would definitely like a second perspective on this, sooner than later.

* If anyone has suggestions for the Baltimore/Washington area, please let me know.

Thanks for your post reminding and encourage us to do the right thing.

[SouthFloridaLady in reply to shoshanaz]

I travel from Florida to the Dana Farber, in Boston, for my specialist. That is how important it is to me, I also see a hematologist in Florida for periodic checks.

[Cllcanada Top Poster CURE Hero in reply to shoshanaz]

Dr. Bruce D. Cheson, MD at Lombardi... not sure how long he has until retirement however...

~chris

[shoshanaz in reply to Cllcanada]

Thank you for the suggestion.

[Hidden]

I certainly agree that having a CLL specialist on the team is crucial but the example in the letter to CLLSociety is mind boggling. The only words that come to mind to describe the treating physician are arrogance and incompetence.

[Salohcin]

What about CLL specialists in the UK, especially in the North West, has anyone had any experiences that would care to share?

[Purple_lady9999]

My hematologist works at a cancer center. Would that possibly make her a specialist more than someone who only works out of a regular medical practice? Are all hematologists oncologists?

[Cllcanada Top Poster CURE Hero in reply to Purple_lady9999]

CLL specialist tend to be doctors who are clinical researchers, and who limit their practices to leukemia and/or lymphoma. In the U.S. they are often, but not always, located in large clinical research hospitals in major cities...

Here is the CLL research consortiuum link...

cll.ucsd.edu/sites.html

And a list of specialsists who ACOR patients recommend... just revised yesterday...

docs.google.com/viewer?a=v&...

[Purple_lady9999 in reply to Cllcanada]

Thanks. The CLL research consortiuum is definitely out since it's too far. I'm only able to drive myself somewhere 30 minutes away due to fatigue. I'm lucky enough to also have dysautonomia and the fatigue from that alone is bad enough that I had to retire last year at age 55.

Philadelphia is 45 minutes, but I would need to have hubby drive me and push me in a wheelchair from the parking lot. I looked at the Google doc and the lankenau cancer center doesn't seem to be a research center so I would think it's not much different than the Paoli cancer where I go now. I'll have to think about the Kimmel cancer center.

[SouthFloridaLady]

Thanks for posting the updated list. In my area, I notice a few names dropped off, and new ones added. I wonder how the CLL Research Consortiuum actually compile the list.

[Cllcanada Top Poster CURE Hero in reply to SouthFloridaLady]

The doctors list is from CLL patients on ACOR listserver... it is the oldest group on the internet... must be 20 years now...

acor.org/listservs/join/39

Also see

sites.google.com/site/acorc...