Please can anyone post us an idiots guide to the types of CLL treatments in the UK?
There are infusions of Obinutuzumab then Venetoclax mentioned on here. Is this just in the US?
My husband has been offered Calquence. These are tablets to be taken twice a week. Are these for early stage CLL? Has anyone else had this form of treatment? What can we expect?
Do the treatments depend on what country we live in? We live in the UK?
For those who may have been following our story. My husband (who has CLL) had a strep c infection which led to a large angry looking lump on his neck/ shoulder probably in one of his lymph glands. He went to hospital twice and is just finishing his second round of antibiotics. He is due to start treatment asap. How will we know when the infection has gone? The lump is now about 4cms x 3 cms and is not painful any more. He feels very weak and wobbly and doesn’t feel like walking far.
Many thanks everyone for your help.
Kind regards
Anne
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Porty14
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Hi Anne, I saw your post as I was hurrying out but wanted to respond to give you a starting point. This article from Macmillan on U.K. treatments is very informative;
Hi, I am on Acalabrutinib (Calquence). Was given them just as Covid started. You do get another two or three pills to take for a while too. Acalabrutinib to be taken 12 hours apart. Luckily I haven’t had a problem with them at all and my bloods are all good. The anxiety seemed to come when I knew I had to start treatment, but it soon dissipated. Best of luck to your husband
It’s called Acalabrutinib in the U.K. and it’s usually two tablets a day. I assume this is what his consultant has suggested. There are several treatments available in the U.K. and I am on Ibrutinib which is an earlier version.
O and V is available in the U.K. but is a more rigorous treatment than Acalabrutinib and involves more hospital visits.
Colette
PS just read background and dropping platelets and haemoglobin can be a reason to start treatment. My lymph nodes were enlarged but shrunk on treating.
I am on Acalabrutinib, 7+ weeks now. It is the 2nd generation BTK Inhibitor. Major known side effect is headaches which can be reduced or avoided by being well hydrated & with caffeine. Then the normal decreased immunity, increased bruising/bleeding, fatigue & muscle ache. I was full dose on the third generation Zanubrutinib & noticed quick reduction in my lymph nodes size & numbers of them but I could not tolerate its side effect after 13 days on it. But now over 7weeks on Acalabrutinib, my WBC 81->61, Plts 40->94 & Hgb 9.2->11.1. The headaches went for the first 2 weeks straight. The muscle ache is just now easing up. I am in NYC in the USA. I was stable with no treatment for 13yrs 8mos & July marks 14yrs for me when I had a protuding neck lymph node biopsied & joined this CLL Leukemia Family. #GODSPEED🙏🏾🙏🏾🙏🏾 See the indication for treatment list
You and your husband have had a difficult and worrying time recently which can't be making it any easier for you to decide how to proceed with his upcoming CLL treatment.
As well as those therapies already mentioned, ibrutinib plus venetoclax has recently been approved for previously untreated CLL patients in the UK.
Last month, Michael Hallek, a CLL specialist in Germany, wrote a review of first line CLL treatments and it provides an overview of various options including continuous therapy like acalabrutinib as well as fixed-duration therapies like venetoclax plus obinutuzumab and ibrutinib plus venetoclax.
You don't mention it but I assume your husband has been tested for features that will help his medical team learn more about his CLL - eg his IGHV and TP53 mutational status. Depending on what that shows, and on the basis of his preference for either a fixed duration or continuous therapy, they should be able to talk you through their recommendation for him. Michael Hallek's article might also help you to formulate any questions you want to discuss with them.
all very good advice! We are very lucky here in the Uk at this very moment as we have access either routinely, or via clinical trial to nearly all recommended treatments.
For most of us it results in direct choice between a bcl2 inhibitor like you’ve been offered, Acalabutinib which is taken long term, or venetoclax plus obinutuzumab, for about a year.
It then depends on your individual genetics, how far away you are from hospital, and whether you have history of arrythmias, and your preference!
Acalabrutinib doesn’t need many hospital attendances but is taken for years: V&O required infusions initially and so involves more hospital visits and monitoring, but stops after around a year.
Ask your consultant if they are only offering acalabrutinib so that you understand why they aren’t suggesting V&O. A lot of people prefer acalabrutinib. I prefer my V&O!
Short duration 15 cycles Ibrutinib and Venetoclax was approved for first line treatment of treatment naive patients at end of May. At least one hospital was up and running with a protocol at day one, others may take a few months to get up to date.
Acalabrutinib is taken daily until intolerant or progression.
V+O is a short duration 12 cycle treatment, quite intense for first 2 cycles, 8 weeks. During V ramp up there can be 4 days a week getting blood tests and consultations.
Treatment arm depends on genetic markers, IGVH (IGHV), 17p, 53p and fitness. This was how it looked last August, as you will see it's version 11. It's not yet clear to me if I+V will just replace V+O or if the whole first line will switch to I+V.
I take Calquence twice a day. Surprised your husband takes less frequently I am in London. Previously had one or two infusions of Rituximab during the year. Read Calquence leaflet. I am now in remission after 6 months so it works apart from bruising and a few nose bleeds
I have been on the Obin and Venetoclax in the UK now for approx 3 months and about to have cycle 4 of the Obin infusions and ramped up to 400m of Venetoclax( Venclexta)
Please tell your husband that it isn't that bad and it works( so far for me.)
Yes there are side effects and you have some days when you don't feel great especially with fatigue , but generally from my point of view in the UK my treatment has been exemplary.
lots of blood tests at the beginning and the infusions are weekly, but now every 28 days which is much easier.
The nursing staff are wonderful and they have such brilliant knowledge and are always ready to answer questions from worried patients.
The adminstrators on this site give great advice and am sure will be able to help .
Easy to say I know , but try not to worry and read the posts on this site for vast amounts of info about every aspect of CLL which has helped me get through.
Wishing you both well and good luck with the treatment
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Further testing needed?
Skin problems at the end of a clinical trial
YOUR OPINION PLEASE - LONGER TERM REMISSION WITH IBRUTINIB OR SHORTER TERM WITH MORE TRADITIONAL TREATMENTS THAT HAVE LESS SIDE EFFECTS?
UK Patients: Can you help with your opinion about treatment options. Have you received Ibrutinib + Venetoclax as your first treatment?
