venetoclax

[greygirl]

I have been on venetoclax since end of May and am on 100mg and have normal wbc, rbc, abs lymphocytes, hgb etc. only globulin(1.4Low) & albumin/globulin ratio(3-4High) not normal. what happens now? Will my doc cay continue to take or will I go off it now? what has happened with any of you who are on this drug or do not take it anymore and why.

[Mldeterm]

Your marrow is usually the last to clear of CLL. They don’t have all the answers yet but it appears many are on Venetoclax for 12 months and then they assess MRD- in your marrow to determine if you should stop treatment to see how long the remission holds. My husband is in a combo trial that stops all treatment after 19 cycles (12 mos of Venetoclax with Ibrutinib and obinituzimab before and more Ibrutinib after).

Mindy

[lankisterguy Volunteer]

Hi Greygirl,

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I have been on Venetoclax since June 2016. As has happened with all my prior 4 treatments, my Trisomy 12 UnMutated responded quicker than most people. My nodes were gone by week 3 of the ramp up, my bloods were all normal by week 5. I was U-MRD in blood at week 29, and U-MRD in bone marrow the two times we checked it over the next 9 months.

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Since there were reports that several patients were able to stop/pause treatment and have long remissions (PFS - Progression Free Survival) Dr. Furman suggested pausing the Venetoclax in September 2018. By early December 2018 the MRD test showed 3 CLL cells/10,000 and in late January there were 100 CLL cells/ 10,000.

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So I immediately restarted Venetoclax at full dose, and when tested 3 months later I was again U-MRD.

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Since my experience is an outlier vs. the many folks on Venetoclax that have reached U-MRD and stop treatment for several years, I don't expect you to have the same results. However it does point to being able to try pausing Venetoclax and do a hyper version of watch and wait. You likely can restart Venetoclax successfully when the damm CLL cells come out of hiding.

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Len

[greygirl in reply to lankisterguy]

yes, I see, I always go about 6 mo. and cancer starts grow-FCR, Bendamustine. Didn`t find out how long I could go on ibrutinib(couldn`t tolerate it) and zydelig. Too bad for zydelig -had NO side effects accept a fever which led me to pneumonitis and now I was told I can never try it again. Did you have any side effects when starting venetoclax first time and when starting again did you get side effects? oh, by way are you from Lancaster, Pa., or British isles, your web name sounds like Lancaster?

[lankisterguy Volunteer in reply to greygirl]

I'm from Lancaster PA, and spelled it that way for my Brooklyn born wife who keeps pronouncing it Land-kaster instead of Lank-is-ter.

I had only one very minor side effect from Venetoclax, very short 1 hour bouts of diarrhea 2-3 times per month. That's gone now, no other issues.

Len

[greygirl in reply to lankisterguy]

Ha, I live in Az. and the rental condo next to ours had a couple from Lancaster staying but guess they went back this past week.