Hi Everyone - just an update on my treatment plan and the progress I have made. My initial diagnosis Sept last year took me through a wait and watch period, when in February it was decided treatment was necessary. White cells up to 243, extreme fatigue, swollen and painful lymph nodes were the trigger point for my treatment. I tolerated Acalabrutinib well with just a feeling of being light headed and the continued tiredness. Also developed a head cold and chesty cough which would not go. The first two months I remained unwell with spells of feeling low but regular weekly attention and monthly consultations I was always positively led, this in turn helped my confidence and I began to recognise from the test results things were improving.
My treatment plan review took place after three months and it was agreed I would continue with the medication, I can now report my white cells are below the level of when first diagnosed - now at 67 and still falling. During the last month I am feeling a lot brighter and stronger which has enabled me to gradually pick up on my old way of life and exercise. In my favour, so I am told by my consultant, there should be every possiblity I will return to my previous level of fitness. Being advised to take it one step at a time - I am now taking 5k walks, back playing table tennis and out cycling - however no where at the level where I left off. My motivation is boosted by my feeling well - I will soon be back running and setting my sights towards achieving my annual half marathon.
My positive approach and drive comes from my consultant and the team in place at Milton Keynes Hospital supported by MacMillan Charity. Things have obviously gone well for me and there was never a backward step - I appreciate that I am very lucky and so grateful for all that has be done for me. I wish everyone a good journey - take care.
Hi Brian
This all sounds great, glad you are doing so well !
Take care
Cheers Dottie - here’s hoping others doing well too and thoughts going out to all who are on an uphill struggle.
Well hello everyone - it’s time for a brief update and to add to my previous post.
Eighteen months now into my Chronic lymphocytic leukaemia ('CLL') treatment with Acalabrutinib - anxious as things have been I have continued to stay confident - and why? It’s all been due to the wonderful care and attention afforded my way - can never be more grateful! My consultant at our local cancer centre - and of course all the back up team have led me on my journey which to my good fortune has given me reassurance. I continue to have a thorough review every three months and have regular blood monitoring.
Things are at bay and I look forward to each day with positivity as I am somewhat back to my old self. For me to be back running at my local ParkRun on a Saturday morning is my main physical achievement and home life with my dear wife of 62 years is a real blessing as we actively relish each day - we are so thankful.
Needless to say I try to keep to a healthy diet and follow all the advice that comes my way. There has only been one blimp to date - Springtime I went down with a cold and chesty cough but managed to get through it without antibiotics, this was followed by a bad reaction to my annual Covid jab - and for the first time my white blood count rose. For the records after my wait and watch period where my count accelerated to 243 and following the strict medication regime (2x 100mg daily) my count level of 12 has stabilised and I feel fine. Very little side effects, sometimes a little light headed after resting as my blood pressure drops. I am also prescribed Aciclovir(3 x 200mg) to help fight off any virus. Two years into my diagnosis I count my blessings.
My next review is in two weeks time - where I can report back how things have stabilised for the good. From being shell shocked to begin with I am now entering a phase of “what comes next” - my questions going forward are relative to how am I standing up to the treatment, do I need any scans or tests to check long term issues. I feel the short term is over - and I am now into the mid term. How long will this last, will the Acalabrutinib continue its effectiveness, are there any timescales I should be aware of, what can I expect of the long term? Let’s face it I am confident going forward - but by enquiring I can be reassured how things will pan out.
I just hope my ramblings have not been unnecessary and that by my update there is just one thing that gives help and affirms the treatment I have been under.
Thank you - and the Blood Cancer Charity for all that it does in supporting us, plus for the contribution made to research!
Best wishes, Brian
Lovely to read your post @BrianHobbs
Sounds like you’re in a good place.
Also fantastic that you speak so positively about your clinical team.
Our NHS gets a lot of often unfair criticism.
Like you I have nothing but gratitude for the care I’ve received over the last 3 years from Haematology Team at Raigmore Hospital in Inverness and Stem Cell Transplant in Scotland.
I know that posts like yours gives others a lift whenever they are in their journey.
Thank you for taking the time to share your update 