After going through Prostrate cancer in 2020-21 and under gone the radical prostatectomy and come out on the other side essentially cured I thought I was home free for the rest of my life. It was not to be however as in mid 2024 I began to experience fatigue with weak legs and arms. Blood work show elevated white count and was officially diagnosed with Chronic lymphocytic leukaemia (CLL). I must have gone through my wait period before being diagnosed because I was put on Calquence pretty quickly. I’m 72 years old so that may have been a factor. I also have swollen lymph nodes and a biopsy showed the presence of cancer. Initially I was scared to death but now more concerned about side effects and whether the drug will get me back to some sense of normal. After my prostrate cancer my wife and i spent 2 years building a cabin so I went from high energy work to barely walking out to get the mail. I’ll continue to post my journey with Calquence. So far after one week just mild headache.
Hi @Peter52 I am so glad that you have found us.
Yes, I have had 2 cancers too, I reckon it’s the luck of the draw.
I will copy you the Blood Cancer UK details on fatigue.
Blood cancer and fatigue | Blood Cancer UK
I also have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 20 yrs ago and have never had treatment, I am now 74yrs old.
Fatigue is my main symptom and I have learnt to get to know myself and manage it over the years
I hope someone will be able to share their experiences.
Perhaps see how you go on Calquence and yes, please do post your journey and how you get on with your fatigue.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Any concerns perhaps do take them up with your specialist nurse, if you have one, or your medical team.
Be very kind to yourself, I do often find a bit of fresh air and appropriate exercise does help me I am just about to walk to my Pilates class, sometimes I need a nap.
Look after yourself and I look forward to hearing more about you.
Dear @Peter52,
Welcome to our forum. Thank you for sharing your story with us.
I am sorry to hear of your diagnosis of Chronic lymphocytic leukaemia (CLL), especially after having prostate cancer. It is understandable that you were frightened and are worried about the side effects of your medication. You’re certainly not alone in feeling this way and I am sure others will post here to share their experiences of taking this medication.
Treatment for Chronic lymphocytic leukaemia (CLL) has evolved in recent years and moved away from traditional chemotherapy. Calquence ( Alcalabrutinib) is a continuous, targeted treatment for Chronic lymphocytic leukaemia (CLL) and for most people, is tolerated well.
I have linked some information here about some of the side effects of Calquence from Cancer Research UK which you may find helpful Calquence Patient information.
Headaches are a side effect of this medication. Its important to stay hydrated and let your Clinical Nurse Specialist (CNS) or doctor know, so they can advise you on which painkillers are best to take.
As @Erica said, if you ever want to talk things through in more detail, please do not hesitate to give our Support Line a call. We are open until 7pm this evening on 0808 2080 888.
Look after yourself and please keep us posted with your journey.
Fiona ( Support Services Nurse)
@Peter52, I’m sorry to hear of your diagnosis. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in July and started Calquence in early September. Initially side effects were plenty of pink spots which mostly disappeared after a few weeks, although some randomly reappear. I noticed unexplained bruising which began to wear off slowly. Regarding fatigue during the first month of treatment I felt much less tired than earlier in year. For the last 2 months I still have some very low energy days but overall it is not to bad. I think that the key, at least for me, is trying to pace yourself. Best wishes to you.
Yes, I agree @SteveMC and @SteveMC pacing yourself is a brilliant concept and I preach it. The trouble is I feel better, then overdo it and then really suffer and when I feel better then I repeat. I never learn.
I am very much work in progress.
Look after yourselves
Thank you for replying so quickly. I am just now approaching 2 weeks on the Calquence and the only side effect so far is just a mild headache easily relieved by Tylenol or if its my morning pill a cup of coffee does the trick. I’ve had one blood draw 2 days ago which showed a slight drop in white cell count which after a steady rise the last 5 months surprised me pleasantly. My lymphocytes also dropped slightly. I’m hoping taking the medication in the months ahead also improve my energy and strength. Continued reports coming.
One month on Calquence update. Not much to report. No new side affects. Whie blood cell count continue to drop slightly on weekly blood draw and my Oncologist now changing blood draws to every 6 weeks and visits to see him changed to 6 weeks also. Everything he wanted tp see happen is happening. He did have me undergo a PET scan which showed cancer in every lymph node but he expects that to be less so in the next PET scan 6 months from now. I have also started therapy to reactivate muscles after months of idle activity because of fatigue.
Thanks for the update @Peter52 and I hope the therapy helps.
Be ever so kind to yourself, I reckon slow and steady wins the race, please do keep posting