Is Ibrutinib "The Cure"?

Is it too soon to presume this because of a lack of data?

[Cllcanada Top Poster CURE Hero]

I think they need a few more years of data from phase 3 trials. Nobody is suggesting a cure at this point. It doesn't work for everyone and stops working for others, so there is much to be learned. For older, less fit patients it may well be a pill for life... certainly a control, if not an outright cure.

I suspect it will be used in combination with biologics like Rituxan/Gazyva or possibly low dose chemo therapy... this is the direction of many new clinical trials, especially from the German CLL Study Group and MD Anderson. Also it is being tested in combination with Rituxan against FCR.

Imbruvica (ibrutinib) is an excellent 'debulker' of the nodes and spleen, but less successful perhaps in killing B cells and clearing the bone marrow...

Outside the U.S. drug costs are a factor... more on funding costs...

healthunlocked.com/cllsuppo...

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Thanks for your reply. It certainly looks like it might help those refractive patients and as you say post-65.

[andrewschorr]

I would recommend you view our interview with Dr. Susan O'Brien, a lead investigator, as she puts this in perspective: patientpower.info/video/wha...

[Berrytog]

Good morning Stephen M

As one of those fortunate few on Ibrutinib as a first treatment I can only cross my fingers and hope for the best in the absence of a history to rely on. However all I can say as a patient is that so far it looks promising and all that is stated by dr. Susan O'Brien is so. After eight months of treatment my WBC has dropped gradually from 300 to 30, my HG is up to 14 from 7 but my platelets are only up to 11 and recent CT scan show no sign of nodes in all areas. Talking to my trial consultants it is a pill for life but new trials they say will mix it with Rituxan or similar.

As I say it has to be fingers crossed as some patients have failed or progressed so far and stopped, I suppose a lot depends on prognostic markers and mutated or non-mutated as well as other things. I think the thing is being diagnosed with CLL has to be a wake up call for all of us but there has always been the possibility of a number nine bus but that always happens to someone else. Now is the time to remain positive hoping for the best with possible cures on the horizon and enjoy the things in life that have real value and above all, get rid of all that stress that has become part of modern living as I believe it has a lot to do with it, stress is a killer it destroys or weakens us.

[ThreeWs]

An important thing to remember in discussing Ibrutinib/Imbruvica is that a long time is needed to evaluate its efficacy or failure in most cases. In my case it has taken me 31 months to achieve a CR (Complete Response) in the peripheral blood by normalizing ALC numbers and to shrink lymphnodes to below the 1.5cm size that was set to gage pathologically enlarged nodes. This does not mean the blood or the nodes do not contain cancer cells. I will be getting a BMB (Bone Marrow Biopsy) on April 28 to have a look at what Ibru has done to clean out my marrow. Ibru efficacy may well depend in part on how much prior damage a patient may have suffered from other therapy drugs as well as their unique cytogenetic profile.

The other side of the coin is represented by a patient and fellow Lab-Rat I met early on in the Phase I Trial that was not responding to Ibru from the git-go. Where there is one there will be others. Many tweaked versions of Ibru are being developed that may enhance the overall number of patients that could benefit from BTK inhibition therapy.

What is sorely needed is better assessment or deciphering of the DNA/RNA Rosetta stone that is unique to each one of us and will one day guide the use of the most appropriate therapy instead of the largely "see if this works" approach we have today.

WWW

[fieldmeadow in reply to ThreeWs]

All the best WWWs for 28 April. I'm sure we will all be interested to learn the results of your bone marrow biopsy if you are ok about sharing them with us.

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Thanks for all your responses, particularly the video, Andrew.