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.
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.
