Experiences with

Chronic leukaemia

On 6 January 2025, the journal [i]BJ Haem[/i] published a review article titled [i]Management strategies for patients with lymphocytic leukaemia harbouring complex karyotype[/i] written by a team from Padua, Italy.

As chronic leukaemia progression is slower than acute, the symptom onset can be subtle and take years to have an impact on quality of life. Improving symptom awareness and early health seeking behaviour in the general population and targeted education for primary care clinicians may address this.

hi all a bit of a random question here I suppose My mother in law has chronic leukaemia (diagnosed 5 years ago) and wanting to go the all natural route, what would be the prognosis with no treatment?

I’m new to this group chat, and found the information helpful. I see many people started increasing Vitamin D during the “wait and see” period. Is there a certain brand for vitamin C that’s better than others? Thank you!

Hi all, So I have been confirmed with CLL a week ago. I already had my first ever "deep" dental cleaning scheduled for mid April. I told my hematologist/oncologist about this and she said it's fine for me to a have it done and no need for antibiotics before or after since I'm not yet immunocompromised

Morning, we found out yesterday that my husband's CLL has transferred to Richter's Syndrome. He is having a lymph node biopsy and blood transfusion next week and starts chemo on Feb 28th. I've visited the Lymphoma Australia website, and the prognosis doesn't look good. Can anyone who has been through

Abstract report in New England Journal of Medicine Published February 5, 2025 No real new information here and I'm surprised anyone was recruited for this study as the control arm is chemoimmunotherapy and no account appears to have been taken for unmated IGHV or 17p/TP53 as the patients were

Most of us would be aware of the prognostic value of the immunoglobulin heavy-chain variable region gene (IGHV) mutation status of our CLL (See https://healthunlocked.com/cllsupport/posts/private/146164102/the-fascinating-history-of-the-importance-of-ighv-mutation-status-in-cll-prognosis-and-treatment

I get the Dana Farber Newsletter regularly, and felt that a report on latest research in the medications we all use was worthy of reading. My Oncologist and one of her assistant doctors is the originator of the study. Dana-Farber Researchers Share Latest Blood Cancer and Blood Disorder Research Published

I am currently on the watch and wait protocol. Yesterday was changed to stage 1 with swollen cervical lymph nodes. I would like to download the mentioned result tracking workbook. Thanks in advance.

I have found this CLL community to be such a resource. I wanted to recommend similar resources (listservs, communities like this) for my best friend who was just diagnosed with B cell Lymphoma and will begin chemo soon. Would you please recommend one you know of? thanks.

Hi there Based in Ireland and looking to see if people have gone (maybe virtually) to other countries for second opinions. Nothing really wrong with care but have recently lost a family member after substandard cancer care here so has shaken me. Would people have suggestions in US or UK maybe?

I was wondering if others had experienced a slow increase in lymphocyte count in the years following V&O therapy? I’m worried the CLL is slowly relapsing, but my haematologist says I shouldn’t worry and that it may be due to slow recovery of the lymphocytes after treatment. I don’t have any new symptoms

I’ve had CLL for nine years. I was treated (O&V) a couple of years ago, and my numbers are great! Unfortunately, I developed a secondary cancer this past March. I had emergency surgery for a mass removal in my small intestine. I’m wondering if anyone else has Neuroendocrine Tumors (NET)? I’ve been told

Hi all i currently take supplements D3 &k2 ,vitamin C and B12.am considering taking Echinacea for immune system and turkesterone to help beef meback up . I have cll and currently on watch and wait. Any advice greatly appreciated.

i am a relapsed CLL patient , just diagnosed , live in India, had chemo therapy in 2018 with Bendamustine and ritixamab of 6 cycles. . what are the criteria for staring treatment ? is it good to start at an early stage of relapse of CLL ? Is oral medication good as i am aged 80 years. Please help

This just made my day. We are on the cusp of serious changes in how cancer is treated and managed. Lots of trials will be coming once funding is made available. This is about solid tumors, not CLL, but given the threat of secondary cancers (which I admit without torture that they do worry me), I thought

Rocbrutinib is a new drug offering hope to patients with what are known as gatekeeper mutations that confer resistance to Pirtobrutinib. This BTKi is unique in being both a covalent and non covalent inhibitor of BTK. Patients with gatekeeper mutations have poor outcomes and short survival and demonstrate

Hi All, my journey continues and things are going well besides the infections and so on. Finished Obinituzumab some months ago and now i have four more months of Venetoclax ahead. The problem is that due to antibiotics (almost one or two every month) and maybe Venetoclax i started suffering from hepatotoxicity