Hi, i was diagnosed with active CLL at the start of July and was put straight into treatment, i had probably had it years without realizing it., hadn't been to see a doctor for 14 years. It was only picked up in a random blood test because i had an infection from about 6 wasp stings. So all praise the wasps. My haemoglobin was below 70 so i was sent straight to A&E and from there i spent 5 days on the ward then i was diagnosed, given blood transfusions and introduced to my Haemo team to start treatment. its been a bit of a whirlwind to be honest. i thought i was knackered because i was 59, i have always been very fit and active, i just thought it was age catching up with me that was making me fatigued but after having some blood it all started to make sense.
Anyway three months down the line i am on Obinutuzumab infusions and Venetoclax tablets along with the Rasburicase infusions and all the other anti infection and anti sickness medication, its been an adventure, i seem to spend a lot of time in the cancer suite at the moment and have got to know all the wonderful staff. Had a couple of visits to A&E for high temps. it's been a testing time. From having no contact with doctors and hospitals for most of my life to spending most of my week with them in one way shape or form, it's been a total shock to my system.;
Anyway, hello all, and if anyone else is just starting this journey, my advice would be just put yourself in their hands and let them get on with what they need to do.
Hi RobP1 and I am just dropping in past to say hi and welcome to this corner of the Community although I am always sorry to see folks joining us. 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 NHL 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.
In the blood cancer/Heamatology world CLL is actually seen in the same light as low grade NonHodgkin’s Lymphomas so do check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity (also covering CLL and SLL) who have lots of good reliable information, videos etc.
Lymphoma Action run regular Support Platforms both for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
Always around to help more or just to chat.
