Starting v and o: Was wondering what to expect... - CLL Support

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Starting v and o

Swissnology profile image
7 Replies

Was wondering what to expect infusion, ports, venetaclax and o. I start Tuesday!

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Swissnology profile image
Swissnology
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7 Replies
Poodle2 profile image
Poodle2

If you put Venetoclax and Obinutuzumab into the search box at the top (magnifying glass next to it) - you will find all the posts that mention it. All the best 👍🏻

Skyshark profile image
Skyshark

Ports, I think if you don't ask you don't get. Take about 30-45 minutes to install. Otherwise it's a cannula each time, 4 IV in first 4 weeks, then one a month for 5 months. There's a lot of blood test in the first 9 weeks, even more if you are "high risk" TLS.

DanBro1 profile image
DanBro1

I began Venclexta in week one and continued daily 400mg for a full year. I was given a 100mg infusion of Obinutuzumab week 1, then 1000mg infusion a week later, then 1000mg monthly for 5 more months. If you have any issues with the drugs, they will appear in the first month. I had mild chills with my infusions the first month - then smooth sailing the remainder of the treatment regimen. Been in remission for one year now... Why would you want a port? Not me.

RedWyvern profile image
RedWyvern

Hi Swissnology

I Started V&O last Monday and it’s not been a problem.

I’m on the other side of the pond, but it should be a similar experience . As your starting on a Tuesday, I’m guessing that you’ll have blood tests on Monday. Here they started with a cannula, did blood tests first thing in the morning, and started premeds. Then started treatment once the blood tests had come back.

Lets get the worst bits out of the way first:

1. Sleeping the night before, and thoughts during the trip to the hospital.

I wondered how will it go, what will it be like, will it all go ok. Did I leave the oven on, 🥴 All the usual Worries. But don’t worry too much, as the old saying goes, the bark is worse than it’s bite.

2. The cannula going in.

One sharp prick and it’s done, Not really any worse than all the other blood tests you’ve had.

3. It’s a long day.

Take a book. Though you will constantly be interrupted by 1/2 hourly/hourly observations. (Temp, blood pressure, heart rate etc). I must admit I snoozed through most of the day, I blame the antihistamines they gave me 😀

4. Removing the cannula, or more importantly removing the tape around the cannula.

If you’ve got hairy arms, then this is the most painful part of the day.

5. You’ll be told to drink loads of water, 2-3 litres (roughly the same in quarts)the water helps flush the kidneys. if your not in the habit already, especially if you have a swollen spleen, you’ll find you need to go back and fore to the WC a lot.

And that’s about it. 😀

The 1st day is a low dose 100mg to see how you react to the Obinutuzomab. The second day will go even easier. There will be a lot of information to take in, and a lot of pills to take home with you. So if you’re unsure about anything ask, the nurses, doctors and pharmacists they won’t mind.

Good luck with your day and the rest of your treatment

Andy

RSilver profile image
RSilver

Look at others posts as Poodle2 has suggested.Most recently Semesters post titled First Infusion Obinutuzumab.

Murmeli profile image
Murmeli

next to all the great advices drink lots of water, starting the day before O and continue to do so throughout the entire cycle of therapy incl. V.

I experienced dryness of skin, dry mouth etc. (take extra care of teeth since dryness may cause increase of nasty bacteria in your mouth). Nothing to worry. Just take care of extra hydration.

Success! I am off since Oct and feel so much more energised!

CoachVera55 profile image
CoachVera55 in reply toMurmeli

CONGRATULATIONS 🎉🎉🎉

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