Thriving With CLL: What You Should Know About Care and Treatment

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Күн бұрын

Link to Full Transcript: bit.ly/3HlyHdS
What does it mean to thrive with chronic lymphocytic leukemia (CLL)? CLL expert Dr. Catherine Coombs discusses the goals of CLL care, reviews current treatment options, and shares tools for taking an active role in decisions.
Dr. Catherine Coombs is an Assistant Professor of Medicine in the Division of Hematology at The UNC Lineberger Comprehensive Cancer Center. Learn more about Dr. Coombs here:
unclineberger.org/directory/c...
Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization. PEN’s mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome. Subscribe now to receive the latest news on cancer treatment and research: powerfulpatients.org/connect

Пікірлер: 15

@leoinsf Жыл бұрын

I am 86 years old. Was diagnosed with CLL in December after having non-symptom lymphoma for 8 years. Did not feel anything physically after diagnosis until I started to get left side ache. I was put on Imbruvica and have been symptom-free since. I am so pleased with my medical care and have nothing but admiration for my doctors and for medicine in general.

@rozanahwirt1311 Ай бұрын

Very knowledgeable and interesting. Thank you

@terryfrazier1140 4 ай бұрын

THANK YOU, told me things my doctor never told me.

@PatientEmpowermentNetwork 3 ай бұрын

You are so welcome!!

@mauricelevasseur9987 Жыл бұрын

Thanks! Very informative.

@finiteloops8610 Жыл бұрын

Helpful to see this. Thanks from me too!

@rozanahwirt1311 Ай бұрын

What do you do if you have an infection with your CLL ? Strep, flu, laryngitis, something in the mouth, etc…

@user-vj2wt7jh7j Жыл бұрын

I have atypical CLL with multiple paraneoplastic syndromes starting with a massive Pulmonary Embolism with cor pulmonale in 2108 spent a week in the ICU. Most of my paraneoplastic syndromes have been neurologic. I have found that oncologists seem to know very little about paraneoplastic syndromes and just ignore my symptoms. I never get any answers and have to research everything myself. I delt with almost a year of appendicitis level lower abdominal pain with no help or answers. It seemed to be a vascular type pain which fit angioedema in my colon which is occassionaly seen with CLL. I have seen peripheral angiedema in the past and the pain was identical to what my patients complained of. I am trying to figure out how to get oncologists to listen, or find an oncologist who knows atypical CLL. I have been treated with Ibrutinib which made me much sicker and cost 30K$ a month, I was finally treated with Rituxan which helped then supposed to start Venetoclax which I was allergic to.

@thequixotryworkshop2424 Жыл бұрын

I am 53, got diagnosed with CLL 2 months ago because I found that my heartbeat got harder and I got severe fatigue. My haemoglobin drops all the time, had to get two blood transfusions just to be able to walk. In my case, if I don’t do anything My heamoglobin will just keep on dropping until I collapse or my heart can’t carry on taking the strain. So I do not agree with your method in my case. The hospital said they can not carry on giving me blood transfusions unless I take chemotherapy. I really do not want this treatment as the side effects outweighs the gamble as they said there is no guarantee that it will work.

@mdrahamatullahmd4574 Жыл бұрын

Some 8months ago i was diagonised with chronic lymphocrytic leukemia blood cancer. After all necessary investigation three cycle of chemotherapy was inserted and two tablet of ibrutinib was said to take daily which i am still continuing. I would be highly indebted and obliged if i am provided with some medical tips for living longer and also dietary stuffs. Please give expert opinion for betterment and wellbeing.