I watched the CLL Support association latest YouTube with Dr Helen Marr. She stated that the first line treatment in the uk is now 3 months of Ibrutinib/Acalabrutinib, followed by 12 months of Ibrutinib/Acalabrutinib and Venotoclax.
Interesting to have clarity on what treatment naive CLLers may go through, in the UK at least, as it seems to have been a bit 'foggy' for a few years.
Dr Marr also mentioned Zanabrutinib is not yet approved by NICE....but hopefully, it will be by the end of the year.
Is there a trial where this treatment combo is given at diagnosis?....would that save our immune systems from deteriorating over time in W&W?
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headjog
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That's interesting! I was never given any choice when it came to treatment. I had had three years of watch and wait, no illness or real tiredness until my white count started to climb. I was then advised that it would be wise to start treatment and told that this would be Acalabrutinib partnered with Aciclovir and Co Trimoxazole. I have tolerated this very well and feel 'normal ' if that's the right word. My consultant can't understand why I have never had CLL symptoms (tiredness, bruising etc) other than hot night sweats. I have this dream/nightmare that it's all been a huge mistake and I don't have CLL at all! Well I can dream!!
I have the same dream lol. I like the idea of oral antibiotics/anti fungal medication over IVIG. I would love to hear more about your regiment. No respiratory infections & how are your labs, also where are you being treated if its not too much to ask??? Thanks 😊
So at the last blood tests my bloods were all within normal ranges. My liver, kidneys etc were all fine and I wasn't showing any anemia. My consultant says that I can consider myself in a good partial remission but if I stopped the medication, then my numbers would more likely increase again and I would eventually start to feel ill.I am 71 next week, I live on the east Yorkshire coast in the UK and my treatment centre is Scarborough North Yorkshire.
Yeah, maybe just a touch of cat scratch fever. Gets a bit hard to deny it when presented with blood and FISH test results.
I didn't get a choice directly. No one said we can give you A for as long as it works or 12 cycles of V+O, which do you want? What was asked was if I preferred a short duration but intense or easier continuous treatment but absolutely no explanation of the significance of that question. Obviously I chose the short duration. A few consultations later I was told they would prescribe V+O but we have to refer you to a larger hospital in the group, 10 miles east instead of 3 miles west.
First appointment at the 2nd hospital the consultant expressed surprise at the choice and said they had to apply to the CDF, I'm in the "data collection" arm.
I+V was approved 2 months after I started treatment.
CLL12 was trial for early treatment with Ibrutinib.
I asked my consultant how long I would need to take Acalabrutinib. She said 'for as long as it works '. Two years on and I am still responding well. Long may it last, if popping my pills twice a day keeps me well, then I am happy to continue. My husband and I are into our 70's and who knows how long we would have left even without CLL in the equation so we aim to try (with extreme care) to live as well as we can.
Hi headjog, in that 30% of CLL patients never require treatment, it’s difficult to assess in what circumstances people would be offered a treatment combo at diagnosis. Treatment may never be required and may actually do more harm to those who remain indolent or never require treatment. For that reason, the treatment criteria remains the most recommended course of action and of course UK NICE approved Ibrutinib +Venetoclax for First Line treatment for ALL Patients 3 months ago which is great news! 😊
do you know how they determine how many patients never need therapy. I heard different percentages already and always wonder since the more people seem to get CLL if this fact changed over time Mickimauser11
I’m not entirely sure by what specific method this medical data is calculated or collected Mick and cannot attest to its accuracy but presumably, like most cancer data, it’s collected and collated. The NHS does have swathes of people involved in performance management, data collection and analysis work so I’ve no doubt that this is plotted.
Over time, the average age of a CLL diagnosis seems to have dropped slightly from about 72 when I was diagnosed to 70-71 now. I was 54 at diagnosis incidentally, Greater and earlier diagnostic techniques presumably account for this. In reality, the fact that a significant percentage never need treatment isn’t surprising given the more advanced age at diagnosis. A more accurate figure would be how many dx under 55 go on to require treatment. If anyone has that info to hand, please share it.
My front line treatment was O+I, got me from Stage 4 to uMRD in 243 days. On twice daily acalabrutin until I come out of remission, hopefully a decade or 3 ...
Following confirmation in January that I needed to begin treatment, I was given the choice between Acala or V&O and the consultant explained the pros and cons of both options. I choose Acala for two main reasons - as a type 1 diabetic for 30 years I was used to daily long-term meds for a chronic condition, so no great hardship there, and the V&O option would have involved flights to Liverpool for the first few cycles of infusions. Having researched (on this brilliant site!) the potential side effects of the initial ramp up of V&O I really didn't fancy the possibility of hanging around airports if I wasn’t feeling great. I was also concerned about how I would maintain my blood sugars during the infusions - would I even feel like eating and would my insulin injections need to be upped or lowered?
Six months in and I know I made the right choice with the Acala. No major side effects, my swollen nodes(which were huge) receded in a few weeks and now my bloods are ‘stable’ and my monthly hospital visits have been pushed out to 3 months. Of course who knows what the future holds but at the moment the Acala is working for me.
I know every one of us is different and have to decide what is best for our specific circumstances but it’s brilliant that more treatment options are becoming available.
my husband had FCR in 2020, as that was the std treatment then. This was part of the flair trial, so although we hoped to get one of the newer drugs, we got what we’d have been offered in non trial.
What would be the std treatment for relapsed patients?
Hi, treatments that I know about available for people in the UK who have relapsed are venetoclax and rituximab for 2 years, or ibrutinib for as long as it works, which can be years and years.
Interesting. I am on the Majic trial in the US. There are two arms. The one I'm on involves Acalabrutinib and Venetoclax. It is for a limited time. It starts with 8 weeks of Acala followed by a ramp-up of Venetoclax for 4 weeks (with Acala) then the remainder of the year on both drugs. After this there is a bone marrow test. If uMRD is reached there is no more drug taking. If not reached you take both drugs for about another year then stop. I am in ramp-up now feeling fine - no significant side effects and blood numbers dropping like crazy. The other arm of the trial is Obinituzimab and Acala.
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Long term treatment for 11q
New to site looking for advice.
B-PLL: Ibrutrinib Monotherapy or Obinutuzumab (aka Gazyva) & Venetoclax Combination as first-line treatment for transformed CLL
What to do?
