Update O and V No More: Sadly I was right I'm... - CLL Support

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Update O and V No More

Palmetto profile image
6 Replies

Sadly I was right I'm posting this to the person who asked me what the final decision would be by our oncologist after husbands neutrophils crashed along with his white count and platelets. Venclexta

was held and GSF shots given. Now decision is no more Obinutuzumab. he had 4 and if counts stable Friday will be on mono therapy with Venclexta 200 mg. I really don't believe he will be able to maintain that dosage and it is more likely to be 100 mg but this is what the plan is for now I am very happy because I want him to have antibodies against Covid and the sooner we can get off the infusions the better.

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Palmetto
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6 Replies
LeoPa profile image
LeoPa

May he do well on V alone and get into the business of antibody production !

Smakwater profile image
Smakwater

Palmetto,

In the event that venclexta may not be compatible for him, have you considered following up with one of the 2nd gen BTK's E.g, acalabrutinib - Zanabrutinib - Pirtobrutinib

From my perspective, the greatest appeals in venclexta vs some of the other Novel treatments are the low adversity profile, and the discontinuation schedule.

If Venclexta does not offer the above attributes, then the second choice may actually be the better choice?

I hope he can get over the top with the venclexta, get to that quality of life phase in treatment.

JM

Palmetto profile image
Palmetto in reply toSmakwater

Thanks JM really hope the low dose Ven will be the ticket. Yesterday after being off of it for 2 weeks blood work is perfect, good hemoglobin, absolute neutrophils etc. absolute lymph count 1.5 I asked the nurse to start him back at 100 instead of 200. We will do that for a week and retest. Dr. Davids as a consultant did say that Acalabrutinib may still be an option even with his chronic a fib but I really hesitate to go that route. Hoping this will be the ticket. I really believe he could be off all therapy right now but if he can tolerate I am not opposed.

Smakwater profile image
Smakwater in reply toPalmetto

I hope the venclexta works out for him. Discontinuation and Umrd provides a content peace of mind.

kathymac5252 profile image
kathymac5252

My husband has been neutropenic for months now....low neutrophils, WBC, and platelets...his veneclex is down to 200 mg and his last infusion with obinituzimab was in November....they fear he may now have an auto immune disease/conditon that will make this an issue. He had Granix shots, and now they seem not to be effective. He now will not get the shots unless he is down to .5 neutrophils....sigh.....he is dangerously open to infection.

Palmetto profile image
Palmetto

So sorry to hear that Kathy! I wonder did your husband have high white counts before he started Ven and O? Reason I ask is my husband never has high white counts, if anything, too low. His CLL never manifests as high white counts. If that is the case, maybe the Ven and O combination is just too strong. At any rate, he only had 4 Gazyva infusions which he needed anyway to put AIHA at bay which was the only thing he really had wrong in the first place! I hope he tolerates maintenance of 100 mg. but I suspect he could head the way of damaging his white cells permanently. He needs to build immunity in case he were to get Covid especially since the vaccine probably did no good at all. Thanks for your response.

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