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 was treaedin the past with Ibrutinib which made me much sicker. Finally Rituxan which helped and was supposed to start Venetoclax which caused an allergic reaction.
Thank you for sharing this wonderful presentation. I have CLL and treated 5 years ago with bendamustine and rituxinab 6 rounds , 12 total. There are under arms recurrence of cll. Seems like im in watch and wait again. No other symptoms. I assume new drugs will be used next time. Im 71 female.
EXCELLENT talk!! Thank you! I'm a bit of an odd duck in that I have BOTH mutated and mutated CLL clones. Nobody has been able to offer any guidance on how that might affect my prognosis. For example, after treatment fixed duration with V-O will my unmutated clone come back and dominate my disease profile?
I had too many fluoroscopic x-rays and CT scans about 25 years ago for a low back injury that required surgery. I had many epidural injections back in the day before they were limited to three per year. Once, I asked a medical professional what might be the potential hazards of all that exposure to x-rays. He nonchalantly said: "maybe leukemia." He was right. About 25 years later I developed CLL at 13q. Going to start treatment soon. I can only blame myself because I always wondered if all those x-rays might be harmful. It was the pick of the straw in my mind.
Remember when you could go into a shoe store and they had an x-ray machine where you could look in and see the bones in your feet for a proper fit? How much radiation did a kid get from that? Makes one wonder.
@@geirbalderson9697 Yeah I do remember. I was probably around 5 years old. Those things scattered X-rays in all directions. Somebody got smart and spoke up. I'd hate to have been a shoe salesman back then especially.
After 2.5 years of treatment of IBRUTINIB, as all readings in CBC Reports are alright for long time, i hv stopped IBRUTINIB, can there be return of CLL? If so, can.i not restart my IBRUTINIB again, just like we restart antibiotics whenever needed again.
I am on watch and wait and healthy but have a lot of fatigue.I wonder if starting treatment would end my fatigue.Any doctors or patience have any info?I have no other health problems.
Dear doctor. I am a chronic lymphocrytic leukemia blood cancer patient since one year. Currently my doctor is giving me two tablet of ibrutinib daily. I am much confused and anxioua about my life. I am the lone bread winner of the family. Please doctor suggest me foods to eat and drink to survive long.
Start taking 3 pieces of Dates, A small boiled Beetroot, raw peanuts with organic jaggery, these all will improve your hemoglobin which is most important to remain at least above 10mg. (Normal range for male is 13 to 15) Platelets should be minimum above 1 lac. No worry on wbc, being out of range. Most important maintain hemoglobin n live stress free life with family n friends. You can do this.
@@mahendrakamdar9547 that's bad advice and you know it! boiled beetroot and peanut butter is not going to stop the white blood count rising swamping out the bone marrow and strangulating the red cell count. Shame on you for saying that on a public forum who has obvious financial issue.
This was a wonderful talk! Truly a work of love. Things couldn't be explained better. Thank you!
Excellent presentation! Gave me a better understanding of my disease!
agreed. the man made me feel more relaxed. expert with a bedside manner.
It was good, wasn't it? There is a lot of hope out there in terms of medicine.
Thank you so much. Your explanation really helped me see why I am having the treatment that I am currently undergoing.
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 was treaedin the past with Ibrutinib which made me much sicker. Finally Rituxan which helped and was supposed to start Venetoclax which caused an allergic reaction.
Great presentation.
My husband was diagnosed at aged 50…. I can’t find where there is much research done at this early age
Thank you for sharing this wonderful presentation. I have CLL and treated 5 years ago with bendamustine and rituxinab 6 rounds , 12 total.
There are under arms recurrence of cll. Seems like im in watch and wait again. No other symptoms. I assume new drugs will be used next time. Im 71 female.
Great Talk. How do we see more of this Doctor and his methods?
EXCELLENT talk!! Thank you! I'm a bit of an odd duck in that I have BOTH mutated and mutated CLL clones. Nobody has been able to offer any guidance on how that might affect my prognosis. For example, after treatment fixed duration with V-O will my unmutated clone come back and dominate my disease profile?
I had too many fluoroscopic x-rays and CT scans about 25 years ago for a low back injury that required surgery. I had many epidural injections back in the day before they were limited to three per year. Once, I asked a medical professional what might be the potential hazards of all that exposure to x-rays. He nonchalantly said: "maybe leukemia." He was right. About 25 years later I developed CLL at 13q. Going to start treatment soon. I can only blame myself because I always wondered if all those x-rays might be harmful. It was the pick of the straw in my mind.
Remember when you could go into a shoe store and they had an x-ray machine where you could look in and see the bones in your feet for a proper fit? How much radiation did a kid get from that? Makes one wonder.
@@geirbalderson9697 Yeah I do remember. I was probably around 5 years old. Those things scattered X-rays in all directions. Somebody got smart and spoke up. I'd hate to have been a shoe salesman back then especially.
After 2.5 years of treatment of IBRUTINIB, as all readings in CBC Reports are alright for long time, i hv stopped IBRUTINIB, can there be return of CLL? If so, can.i not restart my IBRUTINIB again, just like we restart antibiotics whenever needed again.
Ibrutinib used to be the future, but better more effective non chemo drugs have surpassed it
What are the characteristics of CLL please
I am on watch and wait and healthy but have a lot of fatigue.I wonder if starting treatment would end my fatigue.Any doctors or patience have any info?I have no other health problems.
No need to be so nervous sir.... 🎉
Eat healthy, live stress free life, enjoy family n friends. Forget the decease. Best way forward. You can do it, believe in yourself
Dear doctor. I am a chronic lymphocrytic leukemia blood cancer patient since one year. Currently my doctor is giving me two tablet of ibrutinib daily. I am much confused and anxioua about my life. I am the lone bread winner of the family. Please doctor suggest me foods to eat and drink to survive long.
Start taking 3 pieces of Dates, A small boiled Beetroot, raw peanuts with organic jaggery, these all will improve your hemoglobin which is most important to remain at least above 10mg. (Normal range for male is 13 to 15) Platelets should be minimum above 1 lac. No worry on wbc, being out of range. Most important maintain hemoglobin n live stress free life with family n friends. You can do this.
@@mahendrakamdar9547 that's bad advice and you know it! boiled beetroot and peanut butter is not going to stop the white blood count rising swamping out the bone marrow and strangulating the red cell count. Shame on you for saying that on a public forum who has obvious financial issue.
Not ever getting covid vaccine!
Absolutely agree with you !!!