Update on Venclexta/Gazyva month 5: Hi all... - CLL Support

CLL Support

22,511 members38,660 posts

Update on Venclexta/Gazyva month 5

Palmetto profile image
5 Replies

Hi all, have been replying to some others who are on this combination in the past few months and at one point thought I had to admit my concerns about my husband's response was far better and easier than expected, but it has finally caught up. He is due for his 5th Gazyva infusion and his Venclexta has been dropped down to 200 for the past few weeks, but today his neutrophils are down to .21 and my original concern is now very evident. Doctor finally agrees that he will never be able to do the regimen of 400 mg. of Venclexta for a year and stop. I read from someone here recently that he had been on 100 mg. of Venclexta and doing well for 3 plus years so that was my suggestion today. I had already decided to ask that he have no more Gazyva infusions and continue on only Venclexta and our oncologist is in agreement. We are now holding the Venclexta for a while, will have Neupogen the next 3 days, and then reevaluate on Monday. He has delayed the 5th Gazyva indefinitely and I hope for good. Bear in mind my husband is already 82 and his CLL is not aggressive. He does not have very enlarged lymph nodes nor weight loss or night sweats or rising white counts or lymphocyte counts. They are all normal. His hemoglobin is 13.4 but these drugs are destroying his white cells. I also worry about his immune issue with this covid surge and that Gazyva in particular is depleting his B cells. Doctor highly suggests now to get the third vaccine dose as soon as possible so I scheduled him for Friday. Just wanted to update on what has gone on so far. He was able to reach the 400 mg. of dose of Venclexta but that is when the troubles began. I hope to hear from others who may be taking Venetoclax alone and how you are doing. Hope this helps others who are going through this treatment plan. The good thing is he never had the stomach upset, nausea or other side effects other than the neutropenia. Wishing you all continued health.

Written by
Palmetto profile image
Palmetto
To view profiles and participate in discussions please or .
5 Replies
LeoPa profile image
LeoPa

Does the doctor think that giving a third covid vaccine will help him? I read that they advise at least a 6 months time window after the last Gazyva infusion. Ffp3 masks and isolation seem to be the best bet in this situation.

Palmetto profile image
Palmetto in reply to LeoPa

I don’t think it will do anything but I’m going to take him anyway.

Palmetto profile image
Palmetto in reply to LeoPa

Actually decided against that third vaccine until I discuss further with his doctor. I think he is wrong in suggesting it especially since he had Gazyva only 4 weeks ago. But this is not the first time I have questioned the course of treatment and recommendations.

LeoPa profile image
LeoPa in reply to Palmetto

You can't go wrong by asking the the doctor for his reasoning first.

RogerPinner profile image
RogerPinner

I'm interested in your husbands story because I have recently started on Venetoclax with Rituximab not Obinutuzumab (Gazyva)....this is standard in the UK for relapsed patients.... and have had to stop the ramp-up at 50mg because the drug is wiping out my platelets and neutrophils. (The latter are treatable with G-CSF injections but the platelets need the bone marrow to recover).Rituximab like Gazyva will kill off what are left of my white blood cells, so i am a little nervous about starting the infusions. perhaps you would let me know what your husbands consultant eventually advises him. I know no two patients are exactly alike but nevertheless I'd be very interested.

Roger

You may also like...

imbruvica/gazyva or imbruvica/venclexta

CLL - Venclexta/Gazyva do’s and dont’s

Taking a break from treatment?

cannot take the 6 rounds of Gazyva and 12 months of Venclexta at 400 mg. to hope to get to a UMRD...

Heart Issues and Venclexta?

Has anyone had problems with their heart racing on Venclexta? My husband was diagnosed with CLL 17p

GAZYVA & VENCLEXTA…I thought it wasn’t working. Apparently it was, extremely well

surprised how well this combination has worked for me so far. I hope it lasts. Btw my oldest sister...