Proggresion from 1st treatment

[cartwheels]

My bloods are all going the wrong way and my consultant is talking about possible next treatment after 6.75 years on Ibrutinib. Now I have not been well last year lots of skin issues,lost weight etc. And I. Starting to feel not right. But I don't seem to have no enlarged nodes . When I was In WW I had huge nodes neck , stomach armpits etc . So why have I no enlarged nodes now well visible ones that is and they are talking about new treatment? Anyone else had similar

[neurodervish]

Hi Cartwheels, You may want to include blood lab info, if you have that available. It's very possible that your absolute lymph count (ALC#) is on the rise. When you add lab numbers to the fact that you're "Starting to feel not right," it will help form a better picture of your current health. You've also listed in previous posts that you have a 17p deletion, which is a more aggressive form of CLL.

To my thinking, 6.75 years on Ibrutinib seems like a pretty good run. But if your doc is suggesting retreatment, it sounds like your body may have built up resistance to this particular BTK inhibitor. When you say your "consultant is talking about possible next treatment," what did s/he suggest?

[cartwheels in reply to neurodervish]

My bloods lymphocyte have been rising for 14 months now , was 2 then 4,then 8,then 11 and I think in December it was around 18 he was talking about a trial in Cambridge another btk inhibitor but said it depends on my mutations which he was going to get tested. I am at clinic tomorrow but I have come down with a cough and cold today so will have to see if I can make it . Typical been counting down the days for this appointment

[neurodervish in reply to cartwheels]

It's great that he wants to retest for mutations. I assume he means a FISH test (fluorescence in situ hybridization). Shame about the cough & cold, and hope you're better soon. It sounds like you're in good hands with that consultant.

[cartwheels in reply to neurodervish]

The mutations I think we're to do with possible btk ones and it depends on what ones if I would be suitable for the trial .Will keep you updated

[Skyshark]

Didn't realise you were quite young, just about 60? For the third time, I would very strongly urge you to try to get on the PVR trial and not just P mono. Otherwise you might want to discus Allo-SCT because that's where you will likely be in about 2 years time after P mono.

[Big_Dee]

Hello cartwheels

I never had visibly enlarged lymph nodes any time in W&W but did have very large lymph nodes internally. Blessings.