Shock of our lives, from diagnosis something my wife and self left us confused probably like everyone else - why me?
I have always held a firm belief that through fitness and a good life style you have the chance of good health. At 81 I was still running half marathons, out and about every other day enjoying keeping up with training. Six months ago I decided to ask my GP for a general review to ensure things were in good order - albeit I had noticed a dip in weight and a performance drop. Low and behold we discovered a higher than normal white cell level, then registering 77. Since being on wait and watch since Sept(â24) levels have accelerated to 113.
I am in total admiration of the care coming my way - each monthly consultation and testing have identified where Iâm at stage by stage, even now as I begin to suffer with fatigue and being under the weather, plus the mental anguish of having my exercise and life style put on hold. Choices have come my way - clinical trial or treatment straight away? Weâve opted for treatment now and I am about to have my first course of Acalabrutinib. Our confidence is high, there is so much back up and professionalism to give support in helping things come under control. Any help with understanding the treatment path from your experience would be appreciated.
Springtime and the bluebells - my target for a gentle jog!
I wish you all well on the journeys being made. Best wishes, Brian
A great big welcome @BrianHobbs and I am so glad that you have found us.
I think many of us have had the tremendous shock of a diagnosis out of the blue.
Yes, the âwhy meâsâ, âitâs not fairâ, and I reckon the answer is âwho knowsâ.
We are such complex, unique individuals.
Fitness and good life style personally I reckon is always a positive.
Yes, I have always found the NHS absolutely brilliant when I have needed them.
I will copy you the Blood Cancer UK details on Chronic lymphocytic leukaemia (CLL)
Chronic lymphocytic leukaemia (CLL) | Blood Cancer UK
I also have Chronic lymphocytic leukaemia (CLL) and was diagnosed 21 yrs ago, at 53 yrs old, and have always been on active monitoring.
I hope others will share their experiences, although the advantages of modern treatments are that they are targeted to the individual.
I am a great walker, the ideal occupation for a nosey person like me and I am also a Pilates girl.
Perhaps write down all your questions for appointments, it helps me.
Really look after and be very kind to yourselves and please do keep posting
Spring is springing and the bluebells will soon be out.
Hi @BrianHobbs and a big welcome to the forum.
My diagnosis of lymphoma was completely out of the blue as well and I too was at my healthiest.
No rhyme or reason is there. However, my team did say that being healthy at time of diagnosis was a big bonus, especially when recovering and going through treatment.
I hope others will be able to share their experiences with you. Iâm sure youâll find great value in the forum.
Keep us updated on how the treatment is going.
Take care 
Hi, @BrianHobbs, I was diagnosed in summer (age 67) and started Alacabrutinib in September, along with 3 other medications to manage side effects. No major side effects apart from a few red spots from time to time, increased bruising and generally not as fatigued. I understand that I will be on this medication for life or until it stops working. According to my last consultants report I am âclinically betterâ than I was. I hope all goes well for you.
Thank you Steve - hereâs hoping your treatment plan keeps making improvements.
Very much appreciated Nichola - it is so nice to share details. Wishing you well. B
Thank you Erica - beginning to realise there is this amazing support platform to share details. I will follow up on the info you have given me - together with advice offered. Positives abounding!
Hi my husband diagnosed with low grade proliferative lymphoma and now just had ct scan with no result yet , good to hear of someone else with lymphoma as seems to be more with Chronic lymphocytic leukaemia (CLL) .
Hi @Lindy1.
I have low grade follicular lymphoma. Diagnosed 8 years ago. Radiotherapy and on active monitoring since then.
How are you both doing? Itâs so hard waiting for results isnât it! X
Yes very anxious time , he had no symptoms just incidental finding on blood test, so waiting on type , nice to hear from you
I think it might be follicular he has but thatâs just me presuming after reading research etc til I get myself confused
There are so many different types of lymphoma! Quite a few members on here have lymphoma. Iâll share links tomorrow to different threads which may be helpful as Itâs always good to share experiences. I just donât want to bombard you with information as it can be overwhelming.
I was a happy 42 year old just getting on with work and family life. I had no symptoms either, just a random lump appeared by my ear and although itâs a blood cancer mine never showed in my blood. There can be so many similarities in journeys but so many differences as well.
There is so much waiting at the beginning and I remember having so many questions. Write down any questions you have ready for your appointment. The support line is amazing as well if you need to talk anything through.
Please us know what happens with the test results and keep posting. Itâs a good place to offload, ask questions and just to say how it really is for you X
Thank you so much , good to talk