Living with chronic lymphocytic leukemia (CLL) can be a challenging journey for both patients and caregivers.
However, there is a beacon of hope. Tune in to our latest episode, where we speak to Dr. Mayur Narkhede of the University of Alabama about groundbreaking research and innovative treatments for CLL. Discover the potential of CAR T-cell therapy, bispecific antibodies and other cutting-edge options that bring the promise of new hope and possibilities for those affected by CLL. Don’t miss this inspiring and informative discussion!
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CLICK HERE to participate in our episode survey.Mentioned on this episode:
- Chronic lymphocytic leukemia (CLL)
- CAR T-cell Therapy
- Bispecific Antibodies – Immunotherapy Fact Sheet
- Stem cell transplantation
- Graft-vs-host disease
- Copay Assistance for CLL patients
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- Caregiver Workbook
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Support for this episode is provided by Genentech, Inc.
This information was very informative. I was diagnosed with CLL in 2018. I was asymptomatic and was being monitored. My WBC went as high as 63.5 and I developed large lymph nodes in my groin and under my arm pit. In February 2024 my doctor started treatment with a medication called Calquence and within one month the lymph nodes disappeared and my WBC gradually went down and now it is within normal limits of 6.3. All my blood test are within normal limits, I am hoping that this medication will cure me. I have an excellent doctor and he is very patient and caring.
I also take Calquence. I didn’t have any side effects which makes me very happy. When I first got CLL back in 2015 there weren’t any pills and I had to go on Chemo. It was terrible and I was hospitalized for 3 weeks. I couldn’t go home until my white blood count was up to 5.In 2020 my CLL returned. I thank God every day for Calquence and my doctor for prescribing it.
I started on Ibrutinib (Imbruvica), three capsules, in Dec, 2014. Some of my symptoms, along with several others, were what “Jesse” described above. I’m still taking Ibrutinib but looking at Zanubrutinib because it’s shown to have a better treatment result than both Ibrutinib and Acalabrutinib (Calquence) with less side effects than Ibrutinib. I’m doing very well now. I was almost fatally ill from CLL previously so I’m very grateful. I’ve learned that, though I respect my doctors, and my treatment is at the largest and most highly rated cancer center in the US, but it’s up to me to proactively do my research and get familiar with the facts and study evidence regarding the best treatments and then push hard and persistently to get them. The medical system is such that one needs to respectful, but firm, persistent and proactive to get the best treatment available. One should also know their genetic and chromosomal version of CLL because it’s a highly variable diagnosis. It can also cause many bad secondary conditions. For quite a while after my initial diagnosis (which was in my 40’s, and was based on symptoms, not just an abnormal blood test) I didn’t take CLL seriously. Even after I started getting worse symptoms I didn’t take it as seriously as I should. Only until I got nearly fatally sick did I take it seriously and begin to do my own research, look at the best treatments available and seek doctors that appeared to be on the cutting edge of the science and treatment. After I got out of the hospital, I decided to do my part in this. I’m not cured. I still have some residual disease (according to several bone marrow biopsies) but I’m now seeking treatment to eliminate that. Hope this info is useful.
YOU PEOPLE ARE DOING A GREAT JOB–THANK YOU.
Excellent,informative and I love hearing about new treatments and copay help
Great episode, it provides me with a lot of confidence. I now consider myself being in the “time capsule” as Dr. Narkhede calls it. I am waiting for the new treatment for CLL that suits me.
I have been on Calquence since 8-23, and will have to stop taking or another option due to low wbc and anc. I get a blood test every week and then usually give myself a granix injection to raise the anc above 1 until the next week. My rbc somewhat normal range and platelets a little low. Has anyone else been thru this, and what happens next? What happens to the cll with no treatment. Linda in Michigan