Question:
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?
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Recent updates on early treatment vs. active surveilance (watch & wait) :
2025: patientpower.info/video/chr...
2023: patientpower.info/cll-answe...
2021: powerfulpatients.org/2020/0...
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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.
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Here is a video from late 2018 where Dr. Nicole Lamanna addresses this question:
youtube.com/watch?v=sPS9rE9...
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Dr. Philip Thompson on Patient Power "What Are the Risks of Waiting to Start CLL Treatment?"
patientpower.info/chronic-l...
and an older Patient Power video on "When should CLL be treated an expert explains the signs and symptoms
patientpower.info/video/whe...
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Dr. Matthew Davids 2022 Patient Power video on why Watch & Wait or Active Surveillance is preferred vs. early treatment: vimeo.com/534579102
hmpgloballearningnetwork.co...
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The formal answer from the medical guidelines: emedicine.medscape.com/arti...
Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia (CLL) have been issued by the following organizations:
•European Society of Medical Oncology (ESMO) annalsofoncology.org/articl...
you can save the text by clicking Download PDF in the upper right corner
•National Comprehensive Cancer Network (NCCN) nccn.org/patients/guideline...
•International Workshop on Chronic Lymphocytic Leukemia (IWCLL) 2018 update:
ashpublications.org/blood/a...
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.
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Re: Time to start treatment? From: Rick Furman Date: Mon, 17 Feb 2025 10:45:01 EST
In actuality, the Rai staging uses a hemoglobin of less than 11 g/dl. The Binet staging uses a hemoglobin of less than 10 g/dl. The idea is that the change in hemoglobin or platelets (to less than 100,000) if they are due to CLL cells infiltrating the bone marrow (not immune destruction - AIHA, ITP) indicate that the disease has progressed to the point where there is no advantage to deferring treatment any further.
If the anemia or thrombocytopenia are due to immune destruction, those often have to be treated, and such treatments often treat the CLL as well. We typically do not treat ITP unless the platelets fall below 50,000. It is always important to make sure another cause of anemia is not being missed, as you always want to make sure you are treating the correct issue.
The reticulocyte count is a very helpful means for distinguishing between the two circumstances. Reticulocytes are the youngest red blood cells. They are they red blood cells that have just emerged from the bone marrow within the past day and serve as an excellent means for looking at the bone marrow output. If the reticulocyte count is low, the bone marrow is not producing new red blood cells. If it is elevated, than it is making red blood cells and they are being destroyed in the periphery.
Rick Furman, MD
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Rick Furman Jul 4 2020
Wendy,
It does sound like treatment is indicated at this time. One thing to keep in mind, is that watch and wait is meant to differentiate those who are not going to need treatment for a long time from those who will need it shortly. Once CLL is active, there is no benefit to delaying therapy. Along those lines, watch and wait was a strategy developed when we only had chlorambucil and prednisone. Ineffective therapy with an impact upon bone marrow function. Now that we have all of these new agents, the downsides to starting therapy, in terms of marrow damage, are not there.
Rick Furman
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Re: Significant Fatigue Triggering Treatment
From: Rick Furman
Date: Sun, 05 Jul 2020 16:42:28 EDT
Active is defined by the traditional measures:
1.Hemoglobin < 11
2.Platelets < 100,000
3.Symptomatic LAD or splenomegaly
4.B symptoms
5.ALC doubling in less than six months
There seems to sometimes be an interest in deferring therapy for as long as possible. In truth, once the disease is active, there is no benefit for delaying. This translate to meaning, there is no advantage not starting treatment with a hemoglobin of 10 g/dl, even if you are feeling fine.
There won't be any refinements in iwCLL or NCI guidelines for sometime given the need to generate data to impact those guidelines. There are several protocols testing early initiation of treatment (including on at Cornell with acalabrutinib) for various populations.
My approach is that with ibrutinib, we know 80% of the population will do exceeding well with single agent ibrutinib. Some high risk features (deletion 17p) predicts for patients doing less well with ibrutinib. Our belief is that earlier treatment might help prevent the development of the aggressive cells that lead to the aggressive behavior.
Rick Furman
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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."
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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).
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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
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The Inclusion requirements are:
Patients with any of the following indications for therapy:
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.
cllsociety.org/2018/10/new-...
clinicaltrials.gov/ct2/show...
Len
Use of MRD Status Following Obinutuzumab/Ibrutinib to Guide Subsequent Intensification of Therapy in CLL
Vaccines, 3rd dose, LLS results and more
Is bone biopsy normal during "watch and wait"?
