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.
@rozanahwirt13112 ай бұрын
Very knowledgeable and interesting. Thank you
@terryfrazier11406 ай бұрын
THANK YOU, told me things my doctor never told me.
@PatientEmpowermentNetwork5 ай бұрын
You are so welcome!!
@rozanahwirt13112 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.
@mauricelevasseur9987 Жыл бұрын
Thanks! Very informative.
@finiteloops8610 Жыл бұрын
Helpful to see this. Thanks from me too!
@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.
@carlyoung865710 ай бұрын
Why cant patients on watch and wait get treatment if they want it? Some of the new drugs improve the immune system.
@diegoroswell302 Жыл бұрын
Why post a comment that will never be responded to?
@kathleensueoka3599 Жыл бұрын
I think there was a thought or hope someone might browse comments and perhaps relay the comment information. Be kind please!
@PatientEmpowermentNetwork5 ай бұрын
Hi there - please feel free to use our website for resources, or you can also connect with us by texting ‘EMPOWER’ to +1-833-213-6657
@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.
@MrGrinder608 ай бұрын
What is some of the effects of I feel tired is that normal?