venclyxto and obinutuzumad: my husband starts... - CLL Support

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venclyxto and obinutuzumad

Aherbert profile image
5 Replies

my husband starts this treatment 29th oct ive read the booklet but im still confused about when the tablets start. anyone on this treatment or has been can help with side effects and any good tips

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Aherbert
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Adlucy profile image
Adlucy

I was on this treatment and needed to read the booklet several times to make sure I had taken everything in. I made a spreadsheet which helped greatly: recording dates and times. Make sure you know when to start taking the Alluprinol. Drink plenty of fluid throughout the treatment. I had never drunk so much water in my life! Hope all goes well for your husband.

Skyshark profile image
Skyshark

Day MINUS 3 should start Allopurinol for TLS. Allopurinol should be started 3 days before first IV of Obinutuzumab so it's titrated up to working levels in the blood. Days count -3, -2, -1, 1, 2, 3, there isn't a zero day, just like there isn't a year zero. 1 CE follows 1 BCE.

Cycle 1 Day 1 100mg IV Obinutuzumab (there will be blood tests if high risk TLS [1])

Day 2 900mg IV Obin (more blood tests if high risk TLS [1])

Day 8 1000mg IV Obin

Day 15 1000mg IV Obin

Days 22-28 Venetoclax 20mg (2x 10mg) [1]

Cycle 2 Day 1 1000mg IV Obin

Days 1-7 Ven 50mg [1]

Days 8-14 Ven 100mg [2]

Days 15-21 Ven 200mg (2x 100mg) [2]

Days 22-28 Ven 400mg (4x 100mg) [2]

[1] Low/med risk TLS blood test before then 6-8 and 24 hours after initial dose and before next dose. High risk TLS, blood tests before then 4, 8, 12 and 24 hours after initial dose and before next dose. High risk TLS, halt Allopurinol, 3mg Rasburicase IV.

[2] Low/med risk TLS blood test before initial dose. High risk TLS blood test before then 6-8 and 24 hours after initial dose and before next dose.

My experience was that then NHS can't plan their way out of a wet paper bag. All admissions to the ward were late. First dose of Obin was on day 2. Initial 20mg and 50mg doses of Venetocalx were so late that they should have been missed. So they doubled down with repeating [1] blood tests for 2nd dose and I went home after results for 6-8 hour blood test following 3rd dose.

Skyshark profile image
Skyshark in reply toSkyshark

Have they not given you the Norfolk and Norwich calendar?

abbviepro.com/content/dam/a...

V+O calendar
SeymourB profile image
SeymourB

Skyshark -

Thanks! I can delete my reply, if you like.

=seymour=

SEB0607 profile image
SEB0607

i started 6 weeks ago and as mentioned by Adlucy drinking a lot of water really helps (I drink 3-4 litres of water a day) and I find exercise every day also does. Doing this, I have not had any side effects other than feeling a little light headed occasionally in the first 2 weeks. I am still in the dose ramp up phase for Venetoclax, at 100mg now. Fingers crossed he is the same and has a smooth treatment journey. The worst part is all the blood tests but I have even got used to them now. Good luck.

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