Ibrutinib remission

[moorehugh]

Possibility of complete remission with ibrutinib

[Hidden]

from what i have read it does happen occasionally but a very small percentage. It also helps if you have good markers. I forget the ibrutinib study for this

[moorehugh in reply to Hidden]

Thank you.

[Pepper122 in reply to Hidden]

I’m told it is about 15%. I hv no idea why my treatment was so successful. I starred a clinical program with Dr Byrd at Ohio State at stage four, and he deserves the credit for my success.

[Pepper122]

i’ve been in complete remission for four years after ibrutninib.

[csellies in reply to Pepper122]

But are you still on the drug?

[Pepper122 in reply to csellies]

I stopped 4 years ago when I got in full remission.

[csellies in reply to Pepper122]

How was full remission determlned?

[lankisterguy Volunteer]

I have heard Dr. Furman postulate that the average person that takes full dose Ibrutinib for 5+ years may reach CR (Complete Remission) and U- MRD 4 ( Undetectable Minimal Residual Disease to less than 1/10,000 lymph cells) , but like most of the statistics around CLL there may be lots of patients that get there years sooner and some that will take much longer.

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There was some data presented at ASH 2018 that discussed surprisingly excellent results using Gazyva / Obinutuzumab after one year on Ibrutinib. And several trials are using Venetoclax to reach U- MRD 4 after varying times on Ibrutinib.

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Dr. Furman also has a theory that people that reach U- MRD 4 or 6 on a slow but steady course may have longer remissions than those (like me) that tend to react quickly to treatments.

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Len

[AdrianUK in reply to lankisterguy]

Do you have a link to him talking about these theories? Do you remember if he linked it to clonal evolution at all? I do remember somewhere the idea that short sharp shocks may actually act more strongly on clonal evolution than more gradual ones (tho can’t remember where I got that from and I sure don’t know if there’s real evidence for it). I guess though we have no real way of knowing at this stage what the best treatment strategy will turn out to be either

A. Short sharp shocks with a combination to try and annihilate CLL quickly (Eg the V+I we keep hearing about or other new options) then going back to watch and wait ready to pounce again when needed.

B. Accepting that CLL is basically incurable and doing an ongoing treatment to try and keep it at bay for as long as possible and hoping that the treatment will work for as long as possible.

My own CLL specialist still believes MRD negative status is important as he puts it “especially early in the disease”

Anyway if you have the link would be most interested.

[haposwald]

I been on imbrutinib now for almost 2 months with very positive results so far. Nodes have disappeared, overall pain has reduced nodes and spleen were large enough that I couldn’t bend over to tie my shoes FATIGUE is gone feeling fantastic days 1-15 were great 16-25 a little rough and now back to great! Saw hematologists for first time since starting yesterday. He said his goal with imbrutinib is complete Remission, I questioned him about it he said with initial results that I should relax and let the medicine do it’s job! I am 13q deleted and ATM deleted

[moorehugh in reply to haposwald]

Glad you are seeing progress with Ibrutinib. I am also and after nearly 3 years have a good partial remission.

[haposwald in reply to moorehugh]

That’s so awesome as that’s what I’m hoping for as well!!