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.