CLL treatment prognosis

[HarryMet]

Hi all, I was told at my consult this week that because of the way my CLL was - the word immature was used - that I would not be one of the lucky people who have the FCR course of treatment and then nothing again for years. I’m about to start on the Flair programme next month. Does this mean my overall prognosis is poor or just that I need to get used to regular courses of treatment?

The question related to Chemo/immunotherapy route specifically and the length of time between courses of treatments. Realise this is a question for my clinician but interested in your experience. I’m in my 40s and generally fit and active and generally good at absorbing info. Just a lot to take in!

[Newdawn Administrator]

I’m wondering if the Consultant is trying to say your IGHV is unmutated. The rather simplistic expressionm ‘immature’ suggests this. You’ve obviously been randomised to the FCR arm of Flair and evidentially, people who are unmutated appear to have shorter remission times on chemo but not always. It can still be very successful and as the trial is for 6 yrs with a lifetime oversight, you’ll be monitored carefully.

This is just guesswork on my part but I’d ask the Consultant next time you see him. Ask him what it is about your genetic profile that suggests chemo won’t be durable.

Best wishes with your treatment. AdrianUK may comment as he’s in your position and has had a very successful response to FCR on Flair.

Newdawn

[HarryMet in reply to Newdawn]

Thanks Newdawn. That’s really helpful. Haven’t been randomised yet. I was being taken through each of the options. Should know this month, subject to outcome of blood tests and scan next week.

[Newdawn Administrator in reply to HarryMet]

Oh well it may make my previous observations redundant then Harry. You seemed so certain you were having chemo. 😉

I’m on the Flair trial (ibrutinib and Venetoclax). I think you need a sit down with either the Consultant and/or the trial co-ordinator to clear up any questions. Make a list. I know you’re concerned about work but you need to know what these comments mean about predicting a shorter remission. It’s not a usual prediction to make at this point.

Best wishes,

Newdawn

[AdrianUK]

I agree with Newdawn it’s probably the case that you are IGHV unmutated as that is usually associated with shorter remissions with FCR (but seems to have less effect on the treatment with newer medicines). But having said that if you manage to get to MRDU wirh FCR as I did then I was told I had a ⅔ chance of getting to at least five years before needing further treatment (so quite possibly more). In answer to your other question we simply do not know how long remissions with venetoclax will last for unmutated people or how long ibrutinib will go on working. But new drugs are being developed all the time. The biggest issue is infection risk prevention so do ask if there’s any time or point in any last minute vaccinations before treatment and also talk about what prophylaxis antiinfectives you need.