Experiences with

Mantle cell lymphoma (MCL)

Hello, My dad started 100mg/daily of Calquence for manle cell lymphoma on September 9, 2024- a smaller dose because of his age, and high risk status. He has lost a lot of weight and is always tired. Any one else experience extreme fatigue - and any suggestions on how to deal with it, and same with advice

Hello, My father, 84 years old, has non-Hodgkin's mantle cell lymphoma, diagnosed in 2017. He started Imbruvica in 2021, which was replaced a few months ago with Calquence because Imbruvica was no longer providing benefits but only side effects.

I was diagnosed with CLL in April 2024. I began experiencing symptoms in October 2024. I am not getting immunotherapy treatments along with taking Venclextra. Lately (since probably a few months ago) it has felt like I am constantly shedding. I do have very thick hair (and long), so I guess it's

After 3 prior therapies (Acalabrutinib, Venetoclax and Pirtobrutinib/Obinutuzumab), my CLL/ Marginal Zone Lymphoma has transformed to DLBCL. Has anyone on here been treated with Car-T for DLBCL? Thank you.

Hav been reading this great forum for years, now I have an opportunity to 'give back'. For my CLL I recently started using Ibrutinib + Allopurinol (Zyloric) to deal with the consequent excess uric acid. After 12 days of use, with no symptoms, on day 13 I developed a fever with a body rash. I was admitted

I got this (webinar below) from the Leukemia & Lymphoma Society (LLS) news updates email. With possible changes coming down the pike, this could enlighten to what those (positive) changes might be that would affect cancer/cll folks. For anyone interested. https://triagecancer.org/webinarreg-post-election-advocacy

I have question- I just had CT scan and all my lymph nodes have decreased in size the scan reader said I was responding to treat well ( I’m not currently in treatment) good thing? But my white count has gone from 80k to 130k in 3 months my other markers are no loss of the 11 or 17 or loss of p53 is that

On 6 January 2025, the journal [i]BJ Haem[/i] published a review article titled [i]Management strategies for patients with chronic lymphocytic leukaemia harbouring complex karyotype[/i] written by a team from Padua, Italy. The article summary explains its aims: [i]"Chronic lymphocytic leukaemia

Happy Holidays to Everyone! CLL Dx July 2022 when I was 78. W&W, Living an active and normal life except some swollen lymph nodes on necks and under chin (diameter of largest is about one inch). A month ago my Hemo/Oncologist ordered a FISH Test and Flow Cytometry. Results are as follows FISH FINAL

Recently diagnosed with Stage 3 CLL. Currently on Brukinsa and will be soon be starting Zometa (bone resorption infusion). Apparently, it is quite rare to have CLL that also presents with bone damage. In my case, I had a walnut sized tumor in my T12 vertebrae that had to be radiated. I also have

[u][i]Golexanolone[/i][/u] [i]A relatively new drug that is in clinical trial mostly being tested to help relieve cognitive and motor functions. It is hopefully to be used for Parkinson patients as well as those with hepatic encephalopathy in PBC. it was being tested in the laboratories

My Platelet count on my three monthly blood test has gone from 201 to 160 do they increase again or keep going down.? WBC is now 57.8 and Lymphocytes 53.5 Heamoglobin 140 Neutrophils 3.6 Basophils 0.2. Thanks

hi everyone not strictly pain related. But I’ve been a life long blusher / flusher. I’ve heard venlafaxine can help. Had anyone had any experience with this please? Or any other remedies please! Thanks

My ex was diagnosed with CLL about 6 years ago and was at stage zero until this year. She is starting Venetoclax and immunotherapy this week and I was just checking to see if anyone had experience with this? TIA

Hi Tedrog, I also started allopurinol when I started my Acalabrutinib one and a half years ago. It took almost a year for my lymphocytes to go down, so I remained on allopurinol the whole time until they were within normal limits. The thinking was that I should stay on it as long as my lymph’s were

H.”ere is an article that some might be interested in: There are many more news articles about this. The research was done at University of Windsor in Canada and the clinical trial is at the Windsor Cancer Center. There is also some ongoing research of cancer cells and various types of mushroom

I have CLL. I be am 4 months into a 1 year targeted immunotherapy plan. I receive a monthly infusion of Obitinubinazab and 300mg venclexta daily. I am very tired everyday. Went from 400mg to 300mg to try and help. Still exhausted. Anyone have similar experience ?

After the help I had yesterday, another question.Can I ask if a multi b vitamin is necessary? The dr I saw at the start says no, as you can get most from food, I have read on a fb group about taking multi b's and I did for a short time take the recommended ones, without b6 though. I know that b6 can

Just read a bit of the article linked lower down: [i]In a 2016 study of gingko biloba supplements bought in London, 33 out of 35 showed evidence of adulteration or extract levels which were too high or low; when a UCL and BBC team looked at 70 milk-thistle, evening primrose and gingko supplements, 36%