Experiences with

Chronic leukaemia

After 5 months on Acala twice a day and having just finished my Obin infusions, my lymphocyte count is now 3.6, down from 280 before my treatment began. Obin killed my leukemia cells so fast at the beginning I got hospitalized for 36 hours with TLS as my kidneys were overwhelmed with dead cancer cells

I was just advised by my vascular surgery team that CLL greatly increases your risk of blood clots hence the need for a surgical intervention. I am just in the process of researching this further and was wondering if this community could shed further light on this for me. thanks

Following on from the interesting discussion on testing for 17p del and TP53 disruption/mutations I thought it might be worth posting this paper which sets out how this testing and analysis is done. It's published by ERIC, the European Research Initiative on CLL, and is the 2024 update of the last

Following 12 months of rising lymphocytes I’ve just had confirmation that I’ve got CLL. Not great news but genetic tests are encouraging, so I’m low risk watch and wait at this time. This comes after 21 years of living with another form of blood cancer, Essential Thrombocythaemia (ET for short). That

Did a 'deep dive' on Lymphatic Drainage. What kept cross-referencing was rebounding. So, I got in the market for a mini-trampoline, then decided to 'go full send', committed to an annual membership at a trampoline park. Forget the dogma, 'this is for kids'. Usually there when kids are in school,

Hi from Australia! i have joined this forum after searching for alternative treatments to chemo for my dad (83) CLL 8 years on. I am very open minded with a slight bias against chemo after watching my mum suffer and pass from breast cancer. So not wanting my dad to have chemo unless it’s a last resort

Could hypopharynx fullness be related to a typical progression of cll or a possible richters transformation? TIA

Hi all Diagnosed since this past June. Started on Brukinsa due to 6mm Supraclavicular node. Tolerating well on reduced dose of 240mg. I have a Notch 1 mutation and a normal FISH. No one has ever mentioned this mutation to me and was afraid to ask. Can anyone give me information on this. Also negative

Mike Peters from a Welsh music band The Alarm had CLL for 29 years but was diagnosed with a Richters transformation this year. He received treatment in the UK STELLAR trial which adds Acalabrutinib to the usual R-CHOP chemotherapy. He's had a spectacular response and his story is here http://digitaleditions.telegraph.co.uk

Hi AllI have had chemo for high grade B cell and Richters Cll. In remission for 2 years but now regressed with nodes in 3 areas. Am on Watch Wait to see how fast growth is. They say possibility of an inhibitor drug called Zanubrutamide if growth of Richters gets faster. Googled drug but says

I’ve had CLL B cell for 16 years. I had a great Oncologist but she moved 11/2 years ago so she used to do bone marrow biopsies to check my CLL. My new oncologist does pet scans but as far as I know that just checks for the Lymphoma part off CLl. If I have no tumors she says my cancer isn’t active. But

I learned that I am IGHV mutated / TP53 unmutated, then received the following additional results without much commentary. Is anybody able to help interpret them? - Chromosome Microarray Analysis (CMA) was performed on this bone marrow sample using 8x60K oligonucleotide arrays (Agilent) to screen for

Original article citation: Tedeschi, A., Frustaci, A. M., Condoluci, A., Coscia, M., Chiarle, R., Zinzani, P. L., Motta, M., Gaidano, G., Quaresmini, G., Scarfò, L., Catania, G., Deodato, M., Jones, R., Tabanelli, V., Griggio, V., Stüssi, G., Calleri, A., Pini, K., Cairoli, R., Zenz, T., … Montillo

I am 74 and in CLL remission after a 24-month course of Venetoclax plus Rituximab completed in September 2023. In July 2023 I was diagnosed with low grade, non-muscle invasive (PTa) bladder cancer and had a 12-month treatment with Epirubicin per respective protocol. Although biopsies at 3-month intervals

As some of you have posted about previously, today I also entered the NIH natural history study for CLL. The visit was good, efficient and pretty painless. Getting on the campus was straightforward only requiring a driver's license and a pre-registration with the CLL team that was seen by security.

Six months ago I lost my mother A strong fighter for lymphoma that was diagnosed in 2016 with CLL The situation get worse .. for more what we called in medicine a “ richter transformation “ change to more aggressive type of lymphoma dlbcl At this time We had many strong, brave decisions together

Encouraging news in this abstract from CLL/SLL researchers at the Northwestern Memorial Hospital, Northwestern University Feinberg School of Medicine, Chicago, for those with aggressive/complex karyotype CLL/SLL* https://pubmed.ncbi.nlm.nih.gov/39243299 The abstract, with my emphasis; [i]Accelerated

[i]Measurable residual disease (MRD) refers to the presence of disease at low levels not detected by conventional pathologic analysis. The association of MRD status as a surrogate end point of clinical outcome in chronic lymphocytic leukemia (CLL) has not been established in the era of targeted agents

Hi everyone , I am so glad with this site. My name is Anja, 67 years old , and I live in the Netherlands. I was diagnosed with CLL in september 2010. In 2012 I got FCR for six rounds. After that I was stuffy and it occurred that I had heart failure because of the chemo therapy. It took me years

I was just diagnosed last week. Wbc of 14 and alc of 8.8 - no symptoms or lymphadenopathy. My tests were just completed and everything seemed very favorable except one thing. The good was low ldh (138), low B2M (1.79), low CRP (.05mg/dl), only 13q14 deletion on FISH (everything else normal on that