06/28/2017 stop ibrutinib and started venetoclax - CLL Support

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06/28/2017 stop ibrutinib and started venetoclax

wwd-bill profile image

My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07

15 Replies

Did he fail ibrutinib early? less then a year?

wwd-bill profile image
wwd-bill in reply to

Yes, less than one year

Venetoclax has shown high rates of durable response in patients who were relapsed or refractory to Ibrutinib, so you have good reason to be optimistic. I sincerely hope that the new therapy is a winner for your husband!

wwd-bill profile image
wwd-bill in reply to skykomish

Thank you very much for your message. Bill took Venetoclax on June 29 and 30, it is ok , but at the night of June 30. His blood pressure reach to 165, heart rate 120/130, lower blood sugar 2.9 and start nausea, LDH very high. On July 1, he took the medicine and vomit, sweat. He got very sick, so doctor asked to stop. Shocked with enlarged tumor within two days after stopping. How to manage that? He is in hospital now because of emergency abdominal distension and pain. he stop ibrutinib on June 28 and started Venetoclax. Who experienced this ? I hope to get some info and continue to try again because no other way can control his CLL

newyork8 profile image
newyork8 in reply to wwd-bill

Could the reaction be due tumor lysis from Venetoclax given high LDH? Best wishes!

wwd-bill profile image
wwd-bill in reply to newyork8

the doctor monitor his urine. It does not like timer lysis. Unftutnaty the specialist is on vacation and can not reach to him until next week. This morning another doctor will prescribed dexamethadone for 40 mg / per day for days treatment and wait to next week.

Hi wwd-bill

I'm so sorry to hear Bill's situation and hope that the medics can soon get to grips with this problem for you.

David

wwd-bill profile image
wwd-bill in reply to David73

Hi David,

Bill is in the hospital and can not access Wifi. The another Dr. prescribed Dexamethasone for 4 days, 40mg/per day for temporary treatment. hope the medics can meet with him next week.

David73 profile image
David73 in reply to wwd-bill

Hi

One of the problems we have with the treatment of CLL is comorbidities - other medical conditions - and treating the varied spectrum of CLL condition together with comorbidities must make a haematologists working life quite interesting! The rapidly changing, quite often now paradigm shifts, new medications add to their challenge.

I do hope that your team can get to the bottom of what is happening and that Bill's condition can improve quickly.

I am thinking of you.

David

I hope he is doing better. Is a cll specialist involved?

Is it possible to stay on ibruvica bit while Venetoclax is ramping up ?

wwd-bill profile image
wwd-bill in reply to Hoffy

Thanks for your message.

CLL specialist has involved in the whole process, Bill is his first patient to take Venetoclax. He asked to stop Ibruvica for at least 2 days and then start Venetoclax. We want to discuss with him to see if there is any possibility to take both new medicine

Hoffy profile image
Hoffy in reply to wwd-bill

Thank. I hope his is doing better. My LDH when down with the imbruvica working. Then Venetoclax. Mine was 1600 before treatment and it came down to about 120 .

When it was high I was given a pet scan to make sure nothing else was going on . It was just high because of the extent of my CLL at that time .

Thank you for your information. The doctor who respondible for transplantation advised to continue try Venetoclax and she said that she will discuss with the doctor who for Bill's treatment. I am looking forward to seeing the doctor soon. Hope everything can go well.

Please describe how failure of Ibrutinib was determined, e.g., white count/ALC increased by ? much over what period of time, or was it Hg, or nodes? We talk about failure but there is nothing specific that I have seen to help us judge that failure is occurring.

Dennis, 70, 17p-, Ibrutinib

The value of PLT, HGB, goes down, the tumor inside and spleen enlarged and cause abdominal distention and pain.

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