I was diagnosed with CLL in November 2018. I wasn't ill in anyway but just visited my GP because I had a small lump on my neck. Initially my GP quite rightly, thought it was connected to some travel vaccinations but when it didn't go down (it never changed at all), I was sent for an ultrasound. The excellent radiographer was concerned that I may have had Myeloma and sent me off to see a Maxiofacial consultant with a view to a biopsy. This showed nothing to take a biopsy from so I was referred for a full blood count. Three weeks on from that second GP's visit I was sent an appointment to see a consultant heamatologist. Then the bombshell!! I was told that I had Chronic Lymphocytic Leukaemia, I only heard Leukaemia and I thought I was going to die. I couldn't understand why I wasn't being treated apart from blood tests. Once it was all explained, I felt better and tried to live normally. Then came the Covid19 Pandemic and our travel wings were clipped. In August 2021 I was told that it might be better to start treatment so I started with Acalabrutinib. What a wonder drug!. I tolerate this very well and thankfully my blood has responded well. My blood counts are now in normal numbers and I am told that I have good partial remission.
Seven Covid19 jabs but still no antibodies, so we wear masks and try to avoid crowds. We have with the help of FFP3 masks began to travel again in Europe.
I publicise my experience as much as I possibly can in hope that others will seek medical help perhaps earlier. I think I possibly had CLL much longer but undiagnosed. I had suffered drenching night sweats and extreme tiredness but always had reason, it menopause, I had been extra busy etc etc.
I now help Leukaemia Care by being a member of the buddy team and will happily help anyone who is in need.
Hi Kitchengardener and a warm welcome to this corner 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 rather 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.
Good to hear that you are getting on with life and like yourself I also volunteer with Lymphoma Action (who actually work a lot with Leukaemia Care UK) as a buddy and a few other roles.
I am sure that you will be a great help to the folks in the group.
You may want to put some information to your profile as it m a s that you won’t have to repeat your story over and over….. you can see my story by hitting my community name or through the link at the bottom of my post.
