I’ll be 79 in 4 weeks. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in Oct 2018 after a routine bloods test revealed WCC 26. With no other symptoms Haematology placed me on 6 mth bloods monitord by GP. Chronic lymphocytic leukaemia (CLL) consultant not seen again till Nov 2023 and examination suggested several lymph nodes with up to 29mm swollen. CT scan one week later confirmed findings and my Chronic lymphocytic leukaemia (CLL) doctor placed me watch and wait. Rise in WCC to 103 in April and another appointment with specialist. His examination suggested increased swelling of nodes. Confirmed again with CT scan in May and with WCC now 115 doctor has advised time to start treatment. I’ve been given the option of Calquence, 2 daily tabs for 5 years, or I daily Venetoclax tab plus Rituximab for 2 years. I don’t have to decide immediately, so thought I would post this msg for comment/experience.
Sorry that you have had to post again, but good to hear from you, @Horsetrent, and that you have obviously got a dilemma of unknowns.
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses,
I hope others will be able to share their experiences too.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Perhaps now is your opportunity to write down all your fears, questions and practicalities for your next appointment.
Please do let us know the outcome.
Also a very happy birthday in 4 weeks
Really look after yourself
Thank you Erica, yes clearly, there are many unknowns going into this treatment, but I’ve been prepared well about both the 2 and 5 year procedures by both my Doctor and my Nurse. The pdf printouts for the drugs off the Macmillan Cancer site plus the Astrazeneca Calquence Welcome Pack have been read well and digested.
And with recent experience of two in-laws doing well after going through surgery and chemotherapy for other cancers, it’s not a fear I feel, but just the fact of having a choice between 2 treatments.
With the independence the Calquence option would provide me, I think that’s the way I’ll go. The other option involves hospital visits for infusion/injection.
Best wishes
Horsetrent
Hi @Horsetrent,
Thank you for updating us and i do hope you are okay? I’m sure others within this forum will have personal experiences of both treatment regimes and hopefully they can offer insight & experience.
In case it is useful i have linked below to some historical conversation mostly around Acalabrutinib ( Calquence) as there seems to be more discussion around this-
(Time to choose treatment for my CLL)
(About to start treatment with Calquence)
I’m glad you have also been given plenty of resources to read through but do understand how difficult making the decision must be. In addition to what you already have, i wondered if this weboage woudl also be useful in understanding more about Venetoclax (Venclyxto) | Cancer Research UK .
The unknown is incredibly difficult to navigate, so if you think it may help to talk things through please don’t hesitate to call our support line at any point- 0808 2080 888.
Do keep in touch, Lauran
Hi Laura,
Thank you for your valuable input. I will indeed, look at each of your suggestions.
As to my current health, I really am feeling fine. Just some arthritis in some finger joints and some pain in the calf/shin area of my left leg when weight is on my feet. Thought it was sciatica due a bulging disc spotted by MRI six years ago. Anyway, after a few weeks it was diagnosed as shin splints, and after another few weeks with no change a visit to my local hospital Urgent Care Centre has raised the issue of Claudication with advice to liaise with my GP. I raised this problem with my fantastic Chronic lymphocytic leukaemia (CLL) doctor last week. He got onto it straight away and arranged some additional bloods be taken, (7 barrels of it, some to be kept at temperature). Unfortunately, the lab needs it doing again, so that’s tomorrow’s appointment.
Enough of my long replies. Thanks once again, and I will call if the need arises.
Kind regards
Horsetrent
Oh @Horsetrent please do not apologise for your reply, it is certainly not as long as some of mine.
You have a lot going on lately, I wonder if it felt like a bit of a whirlwind.
Please do let us know how you get on.
Really look after yourself