The CLL Support Association (CLLSA) is a patient led support charity founded in the UK In 2005,to provide support to CLL/SLL patients and their families by keeping them informed of recent and relevant developments in CLL/SLL treatment and research and to provide opportunities for awareness raising and mutual support.
The association has a dual role of encouraging education and self development while working to improve access to CLL/SLL treatments and care that will improve outcomes.
Due to medical advances, some of the recorded videos may become outdated and should not be assumed to be factually accurate.
The shingles vaccine has something in it called qs-21,i think it can boost the imune system against other types of infections as well i shingles,i think i am right about that.Maybe a doctor will comment on that.
Thank you. My wife was diagnosed in her 40's , it was a shocker obviously. She is in her early 50's now and never mentions it. See does have some genetic disposition that tends to better outcomes and is on a watch and wait program.
Great presentation - many don't recognize how nerve racking going through treatment during the Covid pandemic was for us patients. It's still hard to get a feel for where my immunity is post treatment with Obin/Ven after achieving MRD status. Before treatment I felt nothing from 3 Covid shots... but after treatment, my Covid booster in Nov. hit me like a bus for 2 days - so I assume that's a sign my immunity has improved! But I can attest to the power of these drugs... after my first infusion of Obinutuzumab - just 10% of the full 1000 mg dose, my white counts fell from 254,000 to 54,000 in just 36 hours - we had to stop treatment and go on saline IVs for a week to avoid tumor lysis syndrome. And there was an infusion reaction... sharp drop in BP. The rest of the infusions and the ramp up on Veneteclax went quite smoothly though with no further side effects except for bouts of diarrhea once or twice a week. Amazing new drugs - it's great to see the progress being made on this disease.
Besides exercise what do you think about carnivore for battling CLL. I have been carnivore 2 years now have CLL but doc thinks eating anything is ok!! I will not eat the standard American diet
I’ve been on it for 6 months. No side effects or problems and my numbers are now normal. It’s amazing. My WBCs did shoot up immediately but came down quickly.
Someone who has cancer, or a blood cancer, already looks at diet. Since we need to watch such things potassium, we use a potassium diet to protect kidneys. From drugs.
As it was noted, it can take a significant number of years to harvest and make deductions from data, particularly with CLL. So, my broad question is - do those determining treatment plans (where the drugs are available) take early insight from such trials or is there a rule of thumb to wait for the evidence? If early signs suggested intermittency of a drug was favourable, is the knowledge there to at-least be considered or would that be seen as bad practice…a jump of the gun?
Wow! Superb talk! Now have much clearer understanding of CLL, and optimism regarding current and future treatments. Additionally, as mentioned in one of the comments (by @sammykatz8342), Prof Follows delivers his presentation with a welcome bedside manner.
There’s quite a bit of literature out there outlining the dangers of FCR, particularly with unmutated CLL and the potential for richters transformation. This seems somewhat hazardous information.
I would have to disagree with what you say is not required at diagnosis; or at least some of these tests ought to be done AS SOON AS POSSIBLE after CLL is diagnosed! I had a biopsy and fish testing right away when CLL was suspected. CLL/ SLL was suspected from a CT scan (!) after a car accident. So right away, the doctor knew what lymph nodes were involved through my body, and how enlarged they were, whether they might be pressing on organs. Then the surgical biopsy made the firm diagnosis. A surgical biopsy was determined to be the best, most accurate course as needle biopsies had failed to show my thyroid cancer in the past. The biopsy and fish testing then revealed my risk category (p17 del, tp53 mutation, IGHV unmutated status, etc.) which also guided treatment choices and informed the doctor that time to first treatment might be considerably shorter than for most. It was 8 months, and if I had changed oncologists sooner; treatment would have begun sooner. So much information gained about risk status, progression, treatment options when these tests are completed right away. The earlier the better.
No need for a CT scan to diagnose though and typically for lymph nodes, the visual or inspection of your organs will suffice. We as patients tend to thing in terms of information and answers…which all those test provide. However, what this doc is indicating is that because of the treatments available that those tests are not as deterministic these days.
We shud have never abandoned normal. The only explanation for the non sensical way the govts responded is an agenda outside of Covid. Seems pretty elementary, but as u have made clear - fear causes people to act against their own best interests
I am a chronic lymphocytic leukemia patient. Currently, as per the prescription and suggestion of my oncologist, i am eating capsule Ibrutinib daily. I am feeling well and currently i am free from complication like fever etc. Would any doctor have a look on my case and come forward to give suggestion and advicesabout betterment and well being.
Dr Follows, could you help acquire Pirtobrutinib for me. I'm desperate as it looks like my last chance drug having been on and passed through all other treatments. I'm at the Freeman Hospital Newcastle under a superb Hematology team but it appears it is difficult to get hold of. Thank you for listening.
I am 58 today and suffering from chronic lymphocytic leukemia since one year. As per prescription of my doctor, presently i am taking daily two capsule of ibrutinib. I am alright but unfortunately i am losing my bodyweight. I am highly confused and lost about it . Would any one give some suggestion why it is so.
Very informative. A lot of the information has not been provided by my consultant. Some interesting questions to be asked at my next (telephone) consultation.
I am a cll patient battling since one year. I am consuming tab ibrutinib and feeling well but my bodyweight is deceeasing gradually. Please give suggestion for better living.
Thank you Kate so much, We have had similar experiences . I have CLL and was diagnosed 6 years ago. was on Watch n Wait for around 4 yrs then Chemo in Lockdown which was quite nerve racking at first as I collapsed but got through that ok.The staff at Castle Hill Hospital are Wonderful. But I would like to see all GPs supporting more about this like they do with other things such as Diabetes etc. You are very nervous at first and do not really understand it all, if they had a nurse or someone like us who has a good knowledge and experience of CLL. I think it would really help a new patient with CLL.
Thankyou to everyone who shared. Have to say though it makes me really angry to hear Doctors with platitudes like "If you're going to get a cancer, then this is the one to get" and/ or "you'll probably die of something else first"- especially when you're a 37 years old, pregnant with a 2 year old as I was. My Haematologist was very empathetic. Instead of platitudes, he acknowledged my fears and talked me through the next steps - staging etc. And I think this is the key for Doctors - acknowledge the patient's response, talk about next steps and avoid platitudes. And by the way, the term "watch and wait" is of no comfort. Wait for what? A bomb to go off inside you? I'm Neutropenic, thrombocytopenic, have IVIG every 2 weeks but still no chemo though so does that mean I'm still waiting? After 26 years, It does means I'm extremely grateful!
Excellent video, well done all brave enough to share. I love the fact many are people whose partners have CLL, We do not realise sometimes the emotional stress if puts on the family.
It is helpful for those of us undergoing treatment to hear the experiences of others on the same path. I was diagnosed in January 2019 but went downhill fast whilst on watch & wait and started treatment on the FLAIR trial in January 2020. I am on the Ibrutinib arm of the trial. I am a regular RU-vid contributor having three channels but I have not really talked much about my illness apart from mentioning the effects it has had on my work and travel. It is good to hear how others feel.
