Hi again ButterflyWine ….. no CLL…… IS…… Leukaemia NOT Non Hodgkins Lymphoma……. but most Haematologists will see it in the ‘same light’ as Low-grade non-Hodgkin lymphoma - and yes this can be very confusing…… most other Leukaemia’s like AML…. CML….. ALL… are very aggressive and need to be treated aggressively….. but CLL, SLL and HCL…… are ever so different Yes my journey is rather extreme….. but my type of NHL is a 7 in a Million rare type so this resulted in some twists and turns over the years…… but a positive mid-set helps a lot…… and based on my 24+ years experience until you are told ther ..read more

CLL is Non-Hodgkin Lymphoma? How confusing!? I'll check out the relevant group, thank you. I have just read your journey - ye Gods you've been through it!! But, you've come out the other side. I'm truly hoping for a positive outcome from the test but it's taking such a long time for the results even though it was done under the 2 week fast track as the actual test is being done manually (or so I understand). On the other hand, if it isn't CLL what on earth is it? Good to meet you Mike. Hopefully we will chat again ..read more

Hi ButterflyWine and welcome to this burner of the community. I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable, but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well. Although CLL has the word Leukaemia in it, in Heamatology terms it’s actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very conf ..read more

I've been on a very long journey. First started to feel sick and have pain about 4 years ago in late 2019. My bloods have been abnormal the whole time and in September 2020 Haematology wrote to my GP confirming mild neutrophilia and monoclonal lymphocytosis and that should I develop B symptoms I should be referred back for a blood flow cytometry. Fast forward to a few a week's ago when I was looking through some DSAR paperwork that I obtained in 2021 from my surgery. That's when I discovered this letter. I have had B symptoms all along and yet nothing had been done. I immediately called my sur ..read more

Thank you Mike. I will have a search through the other posts on the forum and also on Leukaemia Care UK as you suggested ..read more

Hi Dave Dave2024 and welcome to this corner of the Community....... navigating a cancer diagnosis journey can be challenging and at times take significant time. I don’t have L eukaemia but I was diagnosed way back in 1999 at 43 with a rare (7 in a million) incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so I do appreciate the challenges of this journey rather well. Back in 1999 my consultant was 99% sure as to what I had....... but it took a further year and 6 biopsies to eventually get the truth...... this is how complicated bloo ..read more

Hi again SyrenStar ......... I have had a look for AUL through the site and can't find any posts about it ........ but the drugs are often mentioned..... so let's see if anyone is around to pick up on your post. I know the challenges well as my type of Lymphoma is 7 in a million. Azacitidine & Venetoclax is often mentioned in other posts so you can put Azacitidine & Venetoclax into the search tool near the top and have a look at older posts and as always you can hit reply to any post. For reliably information do check out Leukaemia Care UK who produce very good information and run vari ..read more

Hi there, to start off I would like to say I have yet to be diagnosed with leukaemia but I am undergoing tests for it. Im looking for some guidance on what to look for and expect. I was diagnosed with prostate cancer in December last year, my psa was only 2.0 bloods were normal. Family history of aggressive cancer with my father, passed only two years after diagnosis. Two months ago I started to get bone pain in my left femur, then the base of my spine, then one day in my car my spine started making a cracking noise, as I got out of the car my spine in the middle gave a loud crack, instant pai ..read more

Hi all. My dad (74 yo) was diagnosed with Acute Leukaemia about a month ago and is now in hospital receiving low intensity chemotherapy with Azacitidine & Venetoclax. Originally he was given a working diagnosis of Acute Myeloid Leukaemia (AML), but since more genetic tests results have come back, this diagnosis has changed to Acute Undifferentiated Leukaemia (AUL), which apparently does not have significant Myeloid or Lymphoblastic characteristics. Apparently AUL is very rare. I spoke to my dad's consultant on Sunday, and he said that he has never seen a live case of it in his 22 years of ..read more

Hi Annie clay and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your son’s diagnosis and ongoing journey. I am Mike and I help out around our various Blood Cancer groups. I don’t have Hairy Cell Leukemia (HCL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkins Lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well. It’s all about learning to live ‘with his’ conditi ..read more