Cll specialists: I hear often the term... - CLL Support Assoc...

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Cll specialists

I hear often the term of CLL specialist. I have to ask if such title exists, Md I have to ask, how does a hematologist become a “CLL Specialist”?

I’ve lived with CLL for 10 years, doing fine so far with Ibrutinib. I get my CLL checks and care in Spain, from an experienced, knowledgeable and caring hematologist. He’s not a CLL specialist.

What does it take for a hematologist to become a CLL specialist? Is it formal medical training besides the hematology specialty? Or special qualifications acquired in a cancer research facility? Maybe an experienced hematologist is someone with a wealth of knowledge who loves his medical field. Someone please shed some light on the matter...

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The doctors and patients have many opinions, but in the USA we often suggest that a doctor that sees ONLY CLL patients, runs clinical trials on CLL treatments, and is a co author on papers submitted at ASH & ASCO each year is definitely in the group. Doctors that treat other NHLS, but primarily CLL, do the research and papers often get included.

Those criteria assure that the newest drugs, genetic testing and treatment paradigms are known and used in their clinics.

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Here is a list from the CLL Society of doctors - most of them meet the above criteria.

cllsociety.org/toolbox/cll-...

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If the patient cannot see these CLL experts for regular care and treatment we suggest forming a team where the CLL expert is consulted once per year and whenever treatment decisions need to be made. The remainder of the time, the patient sees a local doctor- either a Hem/Onc that treats all blood diseases or a GP that is a good diagnostician for all the other issues that arise from having a compromised immune system.

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Len

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One great answer Len, thanks for your time and information! Ed

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In addition to everything Len just said...

When I was first diagnosed with CLL in 2016, I saw a local hematologist, who I thought (and still think) is very good and knowledgeable. When it came time for treatment, and I was asking for ibrutinib so I wouldn't have to do chemo, asking that he put in a special request for me, he told me quite honestly that he could submit such a request but none of his special requests has ever been approved.

Shortly after that I located and began seeing a CLL specialist - a hematologist with BC Cancer Agency whose entire practice as well as his clinical research is CLL. Although he did start me on a single cycle of chemo (FR lite), he was able after that to put in a special request for me to get ibrutinib, supported by 5 other CLL specialists with BCCA. And I got the ibrutinib. So it does behoove a CLL patient to get an actual CLL specialist, not simply a good local hematologist. The CLL specialist will almost certainly have access to more drug options and the latest options including clinical trials. (Although I am not in a trial)

kim

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Thanks Kim!

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Len gave a great answer. Let me add to it with an example.

Suppose you hematologist tells you he is seeing 20 Cll patients right now and considers himself a Cll expert. He might be an expert, depending upon your definition of one. He is, after all, an expert by definition on blood disorders.

But what if, as it turns out, those 20 patients make up 10% of his practice and the other 90% are other blood disorders? And then you learn that among the other 90% patients, only half are any sort of blood cancers?

As a general hematologist, to keep up with the latest, he might be having to read literature on a dozen disorders. At the conference of hematologists (ASH) coming up, there were roughly 300 papers submitted on Cll alone. A true Cll specialist might read every single paper on Cll. A true specialist would have authored one or more of the abstracts. He or she might see 300 Cll patients a year in their practice.

So back to your general hematologist. Can he be a specialist in a dozen different blood disorders and read and understand 300 abstracts for each disorder?

Further complicating things is the fact that our Cll is heterogenous, everyone’s is a bit different. Each flavor of Cll may respond to one treatment choice and not the other. We are all prone to odd complications.

Your general hematologist might see one type of a certain complication every few years. A specialist might see that same complication in many patients and have learned some tricks based on experience.

The field of Cll is so rapidly changing that a well intentioned hematologist might be giving you a treatment that was a good choice last year but not this year.

Of course I am generalizing. There might be some general hematologists who know more about Cll than others. But as a general rule, who can better treat your Cll? A doctor who sees Cll patients as a small part of his practice or one who sees only Cll patients every day?

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Is there a comprehensive list of actual CLL specialists in the UK, where they work and how we get to see them.

Not sure we have a specialist in Stoke on Trent and i think, but not sure, the closest specialist is at Christies in Manchester.

I have never sought a second opinion, foolishly believing, the haematology doctors at my hospital know enough about CLL to know what they are doing.So far so good, but then i haven't had to start treatment yet.

Anne

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Hi Anne.

If it is clear to both you and a local doctor that it is not getting close to time to treatment for you, and if you aren’t having infections or troublesome symptoms a local haematologist is probably fine to monitor you. Especially if you get on well with them.

Also some local haematologists will have a good working relationship with a true cll expert and discuss cases with them. That way it’s possible to get indirect access to the expertise.

The issue comes when it becomes possibly time to consider treatment. This can be a finely balanced decision and even some of us who do see real cll experts have gone to get another opinion at that time for confirmation.

Also if you are prone to infections and it seems you might at some point need an admission being invoked with a cll specialist site where there are haematology wards that could admit you if needed, a nurse helpline you can ring for advice 24/7, on call blood cancer registras that review patients in the a and e if needed, and a team if experts at least one of whom is a published cll author is the ideal.

You are right that the Christie would meet all those requirements as far as I’m aware.

The Christie is also a FLAIR site. Ie they run an important clinical trial in CLL. I would always argue that even if you wouldn’t want to be included in a trial it makes sense to be treated at a FLAIR site as it shows that the hospital has enough interest and forward thinking to be involved and have demonstrated to those running the study nationally that they have enough expertise.

More about the study and a map of where the sites can be found is here volunteered for flair which you can read more about including a site list and map here: cllsupport.org.uk/article/f...

There is always a balance between how far you want to travel to a true expert site and wanting to be treated as close to home as possible. The map of FLAIR sites is a good place to start. Then you can google the hospital and the name of the main doctor running the trial at that hospital to find or more about their services and if they have published in CLL. If a flair site has a very close relationship with one of the true expert sites but doesn’t have their own published expert that can also work well.

Hope that helps.

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Stoke is also a Flair Trial site run by Mr Phillips, the haematologist i sometimes see when i go for check ups and who saw me through my crisis a couple of months ago when it looked like treatment was looming.

All useful information to keep for when treatment is needed.

Thanks Adrian.

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Hi EJM52545.

Just to emphasise the importance of finding a CLL specialist, research conducted by the Mayo Clinic in 2011 concluded:

" For all patients, Overall Survival was superior for patents cared for by CLL haematologists . Physician’s disease-specific expertise remained an independent predictor of OS after adjusting for age, sex, stage, and lymphocyte count at diagnosis. Patients seen by a CLL hematologist were also more likely to participate in clinical trials (48% vs 16%). CONCLUSIONS: Physician disease-specific expertise appears to influence outcome in patients with CLL."

You can find the full report here: updates.clltopics.org/3888-...

Good luck

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Thanks!

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