When will I need treatment? Is Wa... - CLL Support Assoc...

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When will I need treatment? Is Watch and Wait still the best option with newer treatments?


My doctor says Watch & Wait, but I think getting treatment now would be better.

Won’t my cancer spread to other parts of my body and make my condition worse if I wait?

Here is a video from late 2018 where Dr. Nicole Lamanna addresses this question:

Dr. Philip Thompson on Patient Power with the same subject:


And Dr. Matthew Davids on how we make decisions on what treatment:


The formal answer from the medical guidelines:

CLL behaves differently than most other cancers and several major clinical trials have shown that early treatment is potentially more harmful than waiting until symptoms reach a certain level. Since CLL is a cancer of the blood and lymph system it is already throughout your body so early treatment won’t change that.

Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia (CLL) have been issued by the following organizations:

•European Society of Medical Oncology (ESMO) esmo.org/Guidelines/Haemato... click the text that says: “Download the PDF from Annals of Oncology”

•National Comprehensive Cancer Network (NCCN) nccn.org/patients/guideline...

•International Workshop on Chronic Lymphocytic Leukemia (IWCLL) 2018 update:


All three guidelines are in agreement that patients with early-stage CLL should not be treated with chemotherapy until they become symptomatic or display evidence of rapid progression of disease.


An opinion from Dr. Richard Furman Wed, 05 Sep 2018

"Nothing has changed as of yet for watch and wait patients. My belief is that for 75% of patients, watching and waiting, and then starting BTK inhibitor therapy will be sufficient to provide extremely long-term disease control of their CLL. For the other 25%, we have issues with transformation and BTK inhibitor resistance. These patients do need something different. One theory of mine is that earlier initiation of treatment might be beneficial. We are currently writing a trial to test this, but for now, we are still doing it the way we always have."


Mayo Clinic has started a clinical trial to test early treatment with Acalabrutinib:

ClinicalTrials.gov Identifier: NCT03516617 Recruitment Status : Recruiting

First Posted : May 4, 2018

Last Update Posted : September 27, 2018

This phase II trials studies how well acalabrutinib with or without obinutuzumab works in treating participants with early-stage chronic lymphocytic leukemia or small lymphocytic lymphoma at high risk of progression. Recruitment will be 120 patients at Mayo Clinic (in Rochester, MN, Scottsdale, AZ, and Jacksonville, FL).

Very specific exclusion criteria which include:

Date of CLL/SLL diagnosis ≥ 24 months prior to registration

Prior exposure to ibrutinib or to a BCR inhibitor (eg Btk or PI3 kinase or Syk inhibitors) or a BCL-2 inhibitor (eg venetoclax)

Known central nervous system (CNS) lymphoma or leukemia

Patients with any of the following indications for chemotherapy:

Evidence of progressive marrow failure as manifested by the development of or worsening anemia (≤ 11 g/dL) and/or thrombocytopenia (≤ 100 x 10^9/L) not due to autoimmune disease

Symptomatic or progressive lymphadenopathy, splenomegaly or hepatomegaly

One or more of the following disease-related symptoms:

Weight loss ≥ 10% within the previous 6 months

Extreme fatigue attributed to CLL

Fevers ≥ 100.4 degree Fahrenheit (F) for 2 weeks without evidence of infection

Drenching night sweats without evidence of infection

Study runs for 2 years.




7 Replies

Thanks Len! This very important reference post on the Diagnosis, Management and treatment of CLL is now included in our Pinned Posts section: healthunlocked.com/cllsuppo...

Other posts on this important topic are referenced below:

Chronic Lymphocytic Leukemia: USA Updates in Diagnosis and Testing - June 2019


New Directions in CLL: A Review of 2019 Treatment Guideline Updates in USA - June 2019


German CLL12: ibrutinib vs W&W - update at EHA 2019. (spoiler: they are still recommending W&W)


Deciding on CLL Therapy and When to Treat- ONCLive Video discussion Drs. Wierda, Lamanna, Ma, Davids, Coutre


Chemoimmunotherapy Is Not Dead Yet - pros and cons of FCR, BR, etc compared to non-chemo options by Drs Jennifer Brown & Neil Kay. Sep 2017

Includes a GREAT reference treatment decision table in figure 1 to discuss with your specialist when treatment options are raised...


When to Treat - for those worried about climbing WBC counts

(from 2012, but still current as Len noted above)


When do white count numbers trigger treatment? - Video by Dr Susan Leclair


Chronic Lymphocytic Leukaemia: "an overview" & "New treatment options". Dr George Follows - CLLSA meeting June 2014


Watch & Wait Article by Dr. Sharman - April 2013


iWCLL Guidelines 2018


(Our pinned post section is growing much too large, so posts on related topics are being consolidated.)



Neil - you are a great example. Always very helpful.


The CLLSA meeting in London at Bart's again confirmed that W&W is the correct 'treatment' for early stage CLL and starting treatment early has not been shown to have any benefits.. If this was explained at diagnosis by the doctor it would save a lot of worry. Unfortunately most seem to be told we will see you again in 6 months or a year without any explanation.


Yes I totally agree. My frustration comes in when so many factors are added in and then my Dr. and many posts say, well how do you feel? Not so great I say but is it the CLL? And then so many times you never know how crappy you feel until you really feel better. Without a point of reference its a tough call. I'm not running for or to FCR, if it will buy me 10 years as studies say great BUT I can still W and W too. Thanks for your post:)


Len, so lymphadenopathy excludes you on that trial? That’s the only thing I have.


You should contact Clinical Trials Referral Office 855-776-0015

or one of the Mayo trial doctors (aka: Principal Investigators listed below). Any answer I would give would be a wild guess.


See: clinicaltrials.gov/ct2/show...



United States, Arizona

Mayo Clinic HospitalRecruiting

Phoenix, Arizona, United States, 85054

Contact: Clinical Trials Referral Office 855-776-0015

Principal Investigator: Jose F. Leis, M.D., Ph.D.


United States, Florida

Mayo Clinic in FloridaRecruiting

Jacksonville, Florida, United States, 32224-9980

Contact: Clinical Trials Referral Office 855-776-0015

Principal Investigator: Asher A. Chanan-Khan, M.B.B.S., M.D.


United States, Minnesota

Mayo ClinicRecruiting

Rochester, Minnesota, United States, 55905

Contact: Clinical Trials Referral Office 855-776-0015

Principal Investigator: Sameer A. Parikh, M.B.B.S.


Sponsors and Collaborators

Mayo Clinic

National Cancer Institute (NCI)


Principal Investigator:Sameer ParikhMayo Clinic


Responsible Party:Mayo Clinic

ClinicalTrials.gov Identifier:NCT03516617 History of Changes




Thanks Len!


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