If I had teachers like you, I might have gone to med school. I recently learned that my wife has CLL. Even though I'm not in the medical field, I want to learn everything I can about her condition and your talks are absolutely amazing! One of the worst things of a disease is the unknown, and you have done so much to help me understand her situation. Thank you, thank you, thank you.
That’s what my mom has, she got diagnosed with it on April 1, 2015. She waited treatment wise until January of 2021. She ended up doing immunotherapy for 5 months back in April of 2021. After her last treatment, she now has follow ups monthly to as of right now once every three months. She takes ibrutinib everyday along with acyclovir twice a day for shingles and celebrex for arthritis in her knees
You aren’t made to wait for treatment, a lot of times at the time your diagnosed there maybe no need for any kind of treatment right away unless something is going on where the cancer isn’t active per say and, that’s why your mom didn’t do or receive treatment till 2021! Example, I was diagnosed with CLL at the age of 42, however, I didn’t need treatment till 3 yrs later and, it wasn’t for the fact, I had to wait a certain period before, I got treated, the cancer was not active or rather nothing was going on till then, that required a reason to get any treatment!
She must be one strong woman. My husband was put on Ibrutinib and it put him in the hospital for nine days. They had to change to Calquence, and he did better on that.
@@sonyafox3271that's what she meant. She waited for treatment because the stage of the cancer wasn't yet at the point of treatment. It is not about being active..but stages of development as clearly explained in the video. Stage 0 you do nothing. Just wait... Etc etc
The love of my life got CLL as the result of exposure to Agent Orange when he was serving on two different Navy aircraft carriers during the Vietnam War. We lost him in February of 2023, after cancer took his bladder and prostate (not uncommon for CLL patients), as well as multiple skin cancers - all going on in his body at the same time. If you or someone you love has CLL, don’t postpone treatment. And God bless you.
I was just diagnosed with CLL. (Feb. 2024) I am not symptomatic yet and will be living near MD Anderson in Texas. Should I consider a clinical trial for CLL? I am relatively young (not yet 65 yrs old) Thank you for all you do! God Bless!
You really know your stuff. I have CLL apparantly coming out of a 4 year remission. I can't say I understand it all but pretty well for an IT person. I'm now 66 years old, i quit chemo halfway through because I got bad sepsis and was hospitalized a week or so for that. I had been also getting 2 units of blood packed with red blood cells weekly. It only lasted 5 days or so, finallly, my dr. prescribed me cyclosporin (Modified) 50 3xaday and within 2 days, my body stopped shortening the life of the transfusions and I went into remission. I was at NYC Mt Sinai let's see what happens now...The adventure continues!... thank you.
Wonderful incredible outstanding idea of coming up with such RU-vid channel. Millions and probably more than that support your channel and they say between them that it’s helpful even though they don’t comment here. Keep up with this job. Your channel is no. 1 ranked in my opinion.
Maybe i'm wrong but you look under the weather in this video. Hope you are doing well. You are an incredible teacher! God bless you!! Prayers your way!
RN here recently diagnosed with CLL/SLL under investigation for large B cell lymphoma, need a FISH study(you didn’t mention) Now I know Im Rai 2 symptomatic with the typical B symptoms. Recent 50 lbs weight loss in 6 mths, lots of abdominal symptoms and pain. FYI My other presenting initial symptom was thoracic back pain spinal cord compression along with the lymphocytosis . Thats a big problem. Knowledge is power! Fantastic lecture Im gonna send it to my GP😂❤Thank you!!
@maggieensley8819 your story sounds like mine. I have had a weird rash for 1.5 years. It was called psoriasis, but nothing helps. Now it's on my back. Recently got intracellular nutrient test back and shows anemic. I've struggled with fatigue. So, next step is bloodwork. Has anyone experienced rashes? I am in my early 60's.
Great overview of CLL! For the pathogenesis: it is true that we are not sure about the origin of the CLL, but scientific community agrees that some mutations on key genes are involved in the genesis of this malignant disease (familial CLL is also occuring in a small % of the population, and investigation is ongoing to try to find the correlation of certain genetic makeup with the CLL appearence). Importantly, we know for sure, based on preclinical studies to which I also contribute to, that the B-cell receptor signaling (BCR) is playing a role in the pathogenesis and progression of CLL.
I really dunno how to thank you, ur such an angel God sent to us , thank u so much for posting ur videos and these amazing info for free, ur amazing bro , love ya ❤!
Watching from Nairobi, Kenya. Nice video prof, am gaining a lot from you and now it's almost 5yrs since I started your lessons. Ninja Nerd...... please give us certificates 😂😂 and we pay for it.
I have to watch this 10 more times to get it all down, but my mom was just diagnosed at 74. We meet with her med team tomorrow. Ill have lots of questions for them because of the knowledge in this video. Im armed and ready to fight! (With knowledge) xxoo thank you to the creator of this video.
Could you put a date over the treatment section? It’s changing all the time and it would be nice to know if your treatment section is up to date. Thanks!
love how well you explain these complex concepts! this lecture really helped me with my research paper. keep being amazing! how do you know so much about so much?
Thank you so much. I graduated in pharmacology 20+ years ago, but am unfortunately having to revisit this topic due to my wonderful aunt having been diagnosed with CLL. I want to feel useful, or come armed with some information. She’s now been taken off chemotherapy because it wasn’t having enough of an effect given the horrendous side effects she was experiencing. Could I ask you - is bone marrow transplant ever an option for the older population with this disease? I’m a registered bone marrow donor, and would get a hole drilled into my femur without anaesthetic if it meant my Auntie could live a normal life again. She might be 77, but she was fit and formidable before this, and she deserves better. All the best, Siân
I am now 69 years old indian male. Was disgnosed for CLL in March, 2015. I was put on wait wand watch until Aug-2018. I was treated with six weekly infusions with Rituximab and Bendamustin combination. It was normal after that. It started relapsing and in Jan-2024. I was put on six cycles of infusions with Gazyva. At the first cycle it developed sepsys and I was hospitalized for nine days. I have also been taking Tab Venetoclax 400mg a day. I had many side effects but dont know whether it is because of Gazyva or because of Venetocalx. Side effects gradually receded but i am feeling weak and lacking energy. Stopped thinking about it. I am 69 years old. My kids are well settled. I lived a simple and spiritually oriented life. My beloved wife passed away in 2018 with breast cancer. We were married for 39 years. I am finding it impossible to live with her loss. I dont have any desire to live.
I’m really sorry you’re feeling this way right now. I want you to know that there's people there for you, and I care about what you’re going through. It sounds like things are really tough right now, but you don’t have to go through this alone.
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 angiodema 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 am looking for help and get none. I also get no answers, which is very frustrating. I have to research everything myself to get answers. My oncologists don't even try. It is extremely frustrating! I have had to find treatments on my own with no help from oncologists.
Your video was really informative, but... chemo is on it's way out for all cll treatment since ibrutinib came on the scene. When was this video made? And no mention of high risk cll subset (p17 del, tp 53 mutation) which renders chemo ineffective.
Welcome, to the CLL club as I joined in 2018, and am on treatment as of 2024 jan with O+V (obinutuzumab plus venetoclax) which has a terrific success rate for 58% for 5 years, before it stops working.
