Had my bloods today and my consultant spoke how I have been on in a long time 6-5 years and this year my numbers are heading north , 2 then 4 then 6 now 11 in the last 10 months. Wants to monitor me closely and spoke about a possible trial at Cambridge and btk inhibitor but non-covalente . Looking online I think he may be on about Pirtobrutinib . He said he will send my bloods over to Cambridge to check for mutation and then see what might be best.This is different to before when he always said my next treatment would be Vand R . Although my bloods are rising I have no sign of node involvement maybe that's because I'm still taking ibrutinib I don't know. Have to say I knew that maybe something is not right but I'm pleased I have had 6.5 years on Ibrutinib and I may still have a little more time on too . I'm 17p and ibrutinib is my only treatment to date. Any thoughts?
Possibly trial : Had my bloods today and my... - CLL Support
Possibly trial
Hello cartwheels. I like the idea of the non covalent btk drug trial.
Even with 17p cll, you apparently have done very well on a btk drug (ibrutinib), having made 6 and half years on it. To make it that long, it sounds like a btk drug was both effective and tolerable for you. It’s reasonable to assume you will do well on another btk drug that controls your cll with the same mechanism of action, other than that it binds non covalently.
You would still have V plus R in your back pocket. Good luck with whichever route you choose.
Thanks, as I was wondering if V and R would still be good for me , as I mentioned originally my consultant said about V and R as next treatment hence my asking why all of a sudden mental this trial instead of going straight to V and R . Will see if my bloods match what they are looking for and make a decision
Further to cajunjeff 's reply, this recent post from CLLerinOz about a comparison between pirtobrutinib and venetoclax treatment could well be behind the change in your consultant's thinking. healthunlocked.com/cllsuppo... It's great that you have a consultant who is keeping across very recent developments. It's very important to stay on ibrutinib until you transition to your next therapy to avoid the risk of tumour flare.
Neil
Thanks for the link ,and yes I'm ready pleased with my consultant
In my opinion- pirtobrutinib and venetoclax combo could be great if you could get it since you did well with I plus V,
Be well,
Hoffy
No mention of V as well of pirtobrutibab just on its own I think
Depending on IgHV status, with del(17p) the remission duration of VenR is likely to be shorter than reported overall median of 54.7 months from MURANO trial. For CLL14 trial of 1st line VenO the overall median hasn't been reached at 72 months but it's very close as PFS is 53%. U-CLL (unmutated IgHV) + TP53mut had a median of 49 months. While M-CLL + TP53mut have a PFS of 75% at 72 months. About 75% with del(17p) are U-CLL. (Median is from start of treatment.)
I would be wanting to save pirtobrutinib for a combination therapy (PV+/-O/R). After progression on prior BTKi, initial trials found it has a short median 19.6 months. If used it will exclude all future use of BTKi in combination therapy. Combination therapies such as VenR are short duration usually 2 years. R/R pirtobrutinib is effectively short duration, it needs all the help it can get.
nejm.org/doi/full/10.1056/N...
As 1st line triple drug combinations are not yet approved, in the balance continuous BTKi was the best option.
tandfonline.com/doi/full/10...
You mention saving pirtobrutibab for after proggresion with a btk ,well that's where I am at present.so my big decision will be try pirtobrutibab as my second btk,,but pirtobrutibab being non colevant so works a little different,or go for tried and trusted Vand R
See if you can get on this trial (Oxford or Leicester?). Random selection, evens chance. If you get put on PVR I think it's a win (big win). Or VR you have lost nothing, other than the travel and extra testing.
bepartofresearch.nihr.ac.uk...
This trial at Cambridge? One in three chance of being randomised to the BR chemo arm. MURANO showed that has very poor remission duration, median 17 months. Or one in three to IdelaR which may be better than both pirtobrutinib monotherapy or BR but it doesn't compare well to VR.
bepartofresearch.nihr.ac.uk...
UK IdelaR real world UK experience.
pubmed.ncbi.nlm.nih.gov/341...
You might need to have progressed a bit more before meeting the iWill guidelines for treatment for admission to clinical trial.
Thanks for the information as you say I know my consultant said it will depend on my bloods and mutation so will wait and see then chew over pros and cons when presented with real intime treatm options and data
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