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.
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.
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.
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.
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.
Very knowledgeable and interesting. Thank you
THANK YOU, told me things my doctor never told me.
You are so welcome!!
What do you do if you have an infection with your CLL ? Strep, flu, laryngitis, something in the mouth, etc…
Thanks! Very informative.
Helpful to see this. Thanks from me too!
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.
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.
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.
What is some of the effects of I feel tired is that normal?
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Why cant patients on watch and wait get treatment if they want it? Some of the new drugs improve the immune system.