Ibrutinib usage

[Grembold]

When I last saw my haematologist he spoke of a treatment of ongoing Ibrutinib, until such time as its efficacy diminished. I have looked on the www and found nothing on this usage of Ibrutinib. Is there anyone out there on such a course?

[AussieNeil Partner Founder Admin]

I think your haematologist is just contrasting the current standard usage of Ibrutinib where it is taken indefinitely as a maintenance drug to keep CLL under control, with the older immuno-chemotherapy treatments like FCR, where you have up to 6 cycles (one cycle per month) and hope to achieve remission, after which you don't have to worry about treatment for as long as that remission lasts.

In a small percentage of patients on Ibrutinib, the CLL cells develop resistance to Ibrutinib, causing its efficiency to diminish. Researchers now know how that resistance develops and are developing ways of identifying patients where that is likely to occur, as well as ways to combat that.

Does that fit?

Neil

[HAIRBEAR_UK Founder Admin]

Hi Grembold I am surprised that a web search did not return any discussions from patients being treated this way, as Neil mentions in some the efficacy of ibrutinib can diminish as a minority of patients may develop resistance. also it is quite early days so far with this treatment so we do not have long term data yet, there is still a question mark on how long? if you key the word ibrutinib into our search box you will receive a return listing many pages of discussions in this community from members on ibrutinib

For example: healthunlocked.com/search/i...

[Grembold in reply to HAIRBEAR_UK]

Thank you for your reply. At 72 long term is not a target I am aiming for, as long as I will be able to get back up on my pony again for a year or two more, after all, the pony is getting on too at 29 years.

[Graham2222]

I am on Ibrutinib and agree with these two replies. My consultant said the same to me. But I'm naturally hoping that resistance will not develop.

[scorpio74944]

I too am on Ibrutinib, only for 2 months so far. I am at the stage where white count is still climbing. I will be following everyone to see how things progress!

[PE1234]

Me too .i am into my fifth month .My consultant told me it will be possibly a year before the white cells start to go down and then they will go down slowly .

Brenda

[Pennycam]

I started Ibrutinib in early April this year. My counts prior to starting were all worsening and Platelets were 40. as of 3 weeks ago all my lymph glands have disappeared and my bloods are now all within the normal range. after just 4 months treatment I am in complete remission. I consider it am amazing if not miracle drug. My understanding of resistance is that it occurs in patient with poor genetic prognostic markers, of which fortunately I am not one. I have hope for the future after what was a bleak outlook

Penny

[Grembold]

Thank you for sharing your experience of Ibrutinib. I have heard that the CLL response to its use is quick and enduring for most patients, and this makes me hopeful. I am pleased that it works so well for you, and long may it do so.