Hello,
I had a blood transfusion on the 14th October and a second on the 1st November, 3days after the 2nd transfusion I started experiencing lower back pain, pains in my thighs, itchy hands and feet, low blood pressure, low body temperature and dizziness.
Phoned the haematology 4 times told to see GP , after a routine consultant visit and explaining the symptoms again, I was told it could be a side affect from the chemo drug (Acalabrutinib) and was ask if I want to change my drug, which I declined.
3 days after the visit I got a call from the hospital asking me for more blood test and its for antibodies in the blood ,no explanation or follow up call. Looked up antibodies in the blood and all the symptoms I have, shows a reaction to the 2nd blood transfusion but no-one will consider or listen
Hi Merc and a warm 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.
Sorry to hear that you have had some unexplained reactions to your Acalabrutinib and/or your blood transfusions. I have had many reactions to my many drugs and indeed blood transfusions....... I found my clinical team were able to deal with this and communicate the 'why' to me quickly..... with the main information coming through my CNS (Cancer Nurse Specialist)......... do you have a CNS that you can talk this through with?
When is your next appointment?… if it’s not soon I would be requesting an appointment sooner or at least a phone consultation…… at times we have to get our pointy elbows into the system and be our own advocate…… not as it should be but at times it’s the only way.
