Hi julianne, I've was diagnosed last week with CLL when I had high white blood cell count for several months. It seems a bit unreal at the moment as I can't tbh recognise any of the symptoms. I've been told it's early stages. Am to have ct scan shortly having had already ultrasound and chest xray. Then it's a check every 3 months with haematologist consultant. By phone appt..not actually been seen at the hospital. Buit scary but there's lots of helpful stuff on line.
Have you had it quite a while? Hope you're doing OK
Hi Jan, thanks for replying, Sorry to hear about your diagnosis....it's not the best news to start a new yr with but we just have to think positive/surround ourselves with good people and take it day by day.
I did come across a virtual group online which i will attend, so feel free to join if you are looking for support (i find there is alot of information online, but its hard to find actual people/groups where you get to speak/talk to someone going through blood cancer)
feel free to join if you will be up to it. Its on this wednesday 7th of feb at 7.30pm on zoom.
I was diagnosed with CMML in 2015, as you said very rare. I have lived a good 9 years with the disease and very few symptoms. March 2024 while on holiday in Lanzarote Spain I started to feel unwell, like rotten flu.
Cut a long story short, after bone marrow biopsy and blood tests it showed the disease had progressed rapidly. The symptoms were worsening and changing. Haemoglobin was in low 60’s and platelets at 10/15. Weekly blood transfusions started as did chemotherapy. I had 3 monthly rounds of Azacitidine which always ended up with me in hospital on IV antibiotics for a week due to infection. Week 1, 2x subcutaneous injections into tummy for 7/9 days.
Week 2, at home resting getting ready for next round.
Week 3, infection symptoms start, high temperature, riggors, shortness of breath etc.
Week 4, week finish antibiotics and get ready for round 2!
At the end of the third chemotherapy treatment, and while back in hospital with a nasty infection, my spleen had an infarct! About 5cm burst away taking my spleen from 23cm to 15cm. Surviving that I was started on Dexamethasone steroids. I have held my haemoglobin levels since the start of the steroids, and felt amazing for about 5 weeks until the infection cycle started again.
At the moment back to palliative care as still fighting infections that come every 6/8 weeks.
I have a Consultant appointment later today to discuss another 3 month treatment of chemotherapy or continue with palliative and EoL care.
Can’t get all the answers as no one really knows much about it, it’s too rare to throw money at for research. So guess we are the research ♀️
If anyone has any questions I’m more than happy to answer them if I can.
