SZUR

[StasiaURos]

I am on Imbruvica for 3 years 12 trisomy doing well but I read that some of you are resistent and need additional Biologics after 3 years with significant sideffects. I am worry that this may happen to me.

[lankisterguy]

Hi StasiaURos,

From comments from several CLL expert doctors, I believe that approximately 20% of patients can reach MRD neg and CR after 5 years on Ibrutinib. The remainder that become resistant or have strong side effects can be put on Venetoclax when they need treatment again. Of those, more than 20% can reach CR and MRD neg within 1 year, and then stop treatment. That's what I did- and I had no side effects on Venetoclax.

We have at least 2 members that have been on Ibrutinib over 5 years.

Len

[StasiaURos in reply to lankisterguy]

Thank You

[StasiaURos in reply to StasiaURos]

Thank You Very Much

[StasiaURos in reply to lankisterguy]

Len You are very knowledgeable about stages of treatment and you know how to look for help. I used your links’s and call Advocate for help They are helping me. I hope for good solution soon. StasiaURos 2/6/18

[StasiaURos in reply to lankisterguy]

In January I started my 4th year on Ibrutinib. Thank You for listing all helpful foundations and Advocacy which helping me but take long time, I payed 2944$ for Ibrutinib and issue still not resolved, I am patient.(I am retired Pediatrician from NJ and sick with CLL since 2005) I went through a lot. Still hopeful for positive results. How is Dr.in Seattle doing?Stay optimistic, now I am working on diet!! How to hide my answers?

[lankisterguy]

To "lock" or restrict your post- go to the top of this page and look for the v in a separate box at the bottom of the original post. When you click the v a list of actions will appear, click on the EDIT and then look for buttons below the words - "Who can see my post?"

and change the choice from "Everyone" to "Only followers in my community"

Len