I have been on ibruitinib since April 2017 and having had a good response initially, my WBC has levelled between 72 and 60 in the last 4 months so the decision was taken to move onto Venetoclax.
After a few weeks waiting for a bed, I finally began treatment last Friday and so far all is well. My phosphates and neutrophils have remained in healthy ranges and WBC has moved down to 41.
The stay in hospital, whilst long due to an error in pharmacy, was useful as I met a lady undergoing chemo at the start of her STC so was able to gain an insight into the process. I also got to know the lie of the land with regards to the ward timings, staff etc as it is the ward I will be on for my transplant which hopefully will be a couple of months away. More importantly I realised the necessity to bring my own blanket cause it was cold most mornings and I ended up with 5 covers by the end of my stay!
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KAS8
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Thank you. I had a really interesting chat with a research doctor who told me that CLL STC is quite rare at the QE due to the average age at diagnosis of 71 and the W&W periods!
I have discussed it with my consultant but he thinks I'm better off sticking with the new drugs ibrutinib which I'm on and then when that fails veneticlax or the new wave of blockers that are coming through now. Although he said SCT would still be an option in a few years if I needed it . Going to the Leeds conference on march 23rd one of the speakers is a consultant from Leeds QE and had had amazing results in his clarity trial of ibrutinib and veneticlax combination many patients reaching mrd negative so would love to hear his views on this .
I talked about Clarity with the research doctor. NICE are currently reviewing the IV combination and hope for it to be agreed soon. I + Rituximab has also shown some benefit.
Keep us posted on your journey. I’ve just started ibrutinib as my CLL transformed to PLL half way through FCR. If this doesn’t work I’ll be going down the SCT route too. Good luck.
I had an interesting chat with a research doctor about Car T and Car NK and she explained how they work. The U.K. had some trials in London but she has concerns that there is little known about the long term following the treatment.
CAR-T and CAR-NK are new but seem mostly safe. I know people that will start both in the USA. CAR-T and NK have strong advantages over BMT if one can get on a CAR trail in my opinion.
CAR T in CLL can have neurotoxicity issues and cytokine release syndrome...they are learning how to manage them... still.
My friend is doing well 4 days into CAR-NK but the first 30 days, will tell the story.
HSCT can be curative... CARs nobody knows. The one great advantage perhaps to CARs is no GVHD... but CLL patients require IGHV infusions often monthly for a long time... which slightly impacts QOL perhaps...
These are still experiment treatments... but good progress is being made.
HI KASB. I'm sure you will do well on the Venentaclax. I am in a clinical trial where They started me on 140 MG of Ibrutinib back in Nov of 2017. At that time,my wbc count was up to 414,000.Two week ago( as part of the trial) they added the Venentaclax ( has to be "ramped-up " over the first month. Two weeks in ,my wbc is down to 23.000 ( was 142,000 prior to the Venentaclax). Do they still have you on Ibrutinib?
Hi pwebster. Sadly I had to finish Ibrutinib as the combination is not yet approved here. My glands have come up today having stopped Ibrutinib on Friday and I've felt a little nauseous too at times. Seeing my consultant tomorrow so will check my levels. I have to say it's tempting to take the Ibruitinib too as I have a considerable supply in my cupboard (but I won't)
I know the doing the "combo" sounds tempting but that's great you are seeing your consultant tomorrow ( won't hurt to ask if he/she thinks it appropriate). Good luck and keep us posted.
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