venetoclax: I have been on venetoclax since end... - CLL Support

CLL Support

23,258 members39,957 posts

venetoclax

greygirl profile image
5 Replies

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.

Written by
greygirl profile image
greygirl
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Mldeterm profile image
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 profile image
lankisterguyVolunteer

Hi Greygirl,

-

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.

-

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.

-

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

-

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.

-

Len

greygirl profile image
greygirl in reply tolankisterguy

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 profile image
lankisterguyVolunteer in reply togreygirl

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 profile image
greygirl in reply tolankisterguy

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.

Not what you're looking for?

You may also like...

low platelets and venetoclax

I have been on venetoclax for 3 months and only my platelet count is dropping. Has anyone had the...
greygirl profile image

Imbruvica to Venetoclax

I have been on Imbruvica for 4 yrs, all was going great until the beginning of this year. Now my...
MartiP2009 profile image

Venetoclax

I’ve been on Venetoclax for 14 months now and would just like to say that this drug has done...
Racing1961 profile image

Venetoclax, acalabrutnib, obitunzimab

Good morning all! Hope you are all doing well today. I’ve been reading a lot, but not posted much,...
Tton46 profile image

Confused? Venetoclax 400 v. 300

I have posted a few times in response to others about my treatment. Now in Mth 9 and yesterday my...
Steffi50 profile image

Moderation team

See all
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator
AussieNeil profile image
AussieNeilAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.