Obinutuzumab and Venetoclax update

[TheFlyer]

Hi All

I started on the 9th of July and just commenced the start of Cycle 2.

Initially I was focused on have some sort of reaction to the infusion but shouldn't have, all went well no issues with it at all.

Best not to read too much in future and I guess it's only the ones that have some kind of reaction do post. The premeds ie steroids caused a few sleepless nights nothing else.

by infusion four all I had was a couple of Paracetamol before the infusion and all good.

Started the Venetoclax 20mg all good , had an Infusion and 50mg Venetoclax, on Tuesday all good no issues.

Next week will be 100mg then a week of 200mg and finally a week of 400mg.

I have been going to the Ambulatory Care Unit at the Churchill Oxford. The Nurses have been brilliant you can't fault then at all.

I already have an appt on the 10th of September to transfer to Banbury nearer to home so that would be good.

All in all apart for the early uncertainty and the things we over think about it's been fine.

I think personally if you are reasonably fit or aim to get fitter come treatment time if you can ,it seems to be better but that's just my thought's.

Lastly when the Consultant said it's time to start thinking about treatment I thought I'm fine why ?

But you don't realise how slowly Cll changes things well I didn't anyway, so you go along thinking things are normal but there not once I had the 100mg sample of Obinutuzumab I felt different and after the rest on the 2nd day I was energised felt good but that might just be me.

I was really hesitant to start this regime at the start, but so far so glad I did.

Good luck and best wishes.

Jules Still Flying

[RedWyvern]

Hi Jules

Hope you fly through the rest of your treatment, in the same way I’ve done .

I’ve got 4 month of Ventoclax left to go (finished the O part a while back) and everything is going as it should.

I looks like you’ve got through the first bit with flying colours and without any major reactions, which is great news.

Keep drinking loads of water to flush out your system

Keep it up and you’ll soon be as bored of taking pills every morning/night as I am 🤣

Andy🏴󠁧󠁢󠁷󠁬󠁳󠁿

[Steffi50]

Great news. I wish you well on your journey.

[Skyshark]

Can you keep a look out for this 90 minute 20%30min/80%hour rapid rate IV used by NHS? I had it cycles 3 to 6 and I want to hear if it's just me or if it's being given elsewhere.

90 minute rapid rate IV for Obinutuzumab

[Mijoed in reply to Skyshark]

I had that for Rituximab. The first was done slowly and then the next was the 90 minute deal.

[BobbyFour in reply to Mijoed]

Same here.

[Skyshark in reply to Mijoed]

Suppose I ought to come clean.

90 minute rapid rate infusions of Obinutuzumab are not licensed for CLL. They are only licensed for Follicular Lymphoma. They should inform the patient and record consent for off license use in the patient's file.

Dr J. Cunningham at Norwich and Norfolk wants a flat rate rapid IV for Obin but the NHS is busy putting it in 20%/80%.

postersessiononline.eu/1735...

The chemo nurses don't want our company and want us out of the door.

[SEB0607]

thanks for posting this, great to hear a positive story as I am about to start V&O in a couple of weeks. I have spent this month out in the Alps getting myself as fit as possible, walking and cycling as like you I am sure this helps. Wishing you all the best for the rest of your treatment.

[TheFlyer in reply to SEB0607]

Good luck with yours

[Mijoed]

Good to hear the Obinutuzumab went without reaction. My haematologist said it was common to have a reaction to the first 100 but most people complete the rest without further reactions.

You are probably correct in assuming that the people who write about it have had issues. I had to be switched to Venetoclax / Rituximab. I was also quite fit when I was given Obinutuzumab but that didn’t help.

[Dutchie-1963]

Hello TheFlyer,What a coincidence. I have started the same treatment on 18 july, last thursday the second cycle started with an obi infusion and 50 mg venetoclax.

I am treated in Holland as a part of a study.

As for now i dont have any sideeffects. I am more tiered for 2 days after an obi-infusion. Thats it.

Have a nice day!

[TheFlyer in reply to Dutchie-1963]

I had that last Tuesday the Obin and 50mg ,looking forward to the 100mg this coming Tuesday.

[Gavbelly27]

hi I was just reading your post and thought you sound just like me and I’m a couple of weeks ahead of you in treatment I’m on 3rd cycle and have been taking 400mg venetoclax for around 5 weeks now. So I’m just replying to your post cause I’ve been the same as you and I’m glad to know that I’m not the only one who thinks this way

[TheFlyer]

yes will let you know.

[Cdub32]

Hey Flyer..that's great news and huge encouragement for me. I've had two masterful failures with CalQuence and Brukinsa..major bruising and hematoma..in hospital for 6 days from the Brukinsa treatment. Both of my journeys lasted two weeks..not a lot of fun. These have been my only treatments after 2012 diagnosis..and I was up to challenge for both. My Dr's next trick is OBY and VEN...your comments give me more hope that we're not chasing windmills..Best wishes for continued health and success..

[bayside64 in reply to Cdub32]

I also developed hematomas from Calquence and Zanabrutinib. One required surgery which took 19 weeks to heal. O/V was completely successful and I am currently uMRD for 1 year 9 months.

[Cdub32 in reply to bayside64]

I suppose you and I are in that 3-5% that it just doesn't work...thank you for the response and the encouragement. What was your WBC count when you started the Cal and Bru..and then when you took on Oby Ven?..if I may ask...

[bayside64 in reply to Cdub32]

My wbc hovered about 180,00, then a one time spike to 230,00. At that point I started Acalabrutinib, etc. A few months later, I started Ven. Pirtobrutinib is a definite possibility for people who cannot take BTK inhibitors, like us.

[Cdub32 in reply to bayside64]

Thank you..mine was 170 and spiked to 300 on Brukinsa..came down to 130 after the fiasco..bleeding, hematoma..et al. I must admit my spleen and liver reduced in size and felt much more comfortable..however...

[Schoenemanjd]

I’m getting ready for infusion 3 I’m on the same as you !! So far so good just like you my white blood count dropped from 234000 to 2900 after treatment one and Dr said couldn’t be better. Good luck my friend wish you nothing but the best !! PS I wish I wouldn’t have read all the negatives also I too was so scared to start.

[Adlucy]

Great to hear. I had so much energy from the steroids in the premed after the second part of the first infusion that I couldn't sleep. My brilliant CNS said she had never heard that before so I was pleased to see your post. However, I did sleep through my subsequent infusions which was good. I also became super efficient on VandO by making an excel spreadsheet to record all the medication !

[TheFlyer]

I did think of that on my bloods I get the pre treatment, treatment, and day after which is good to see......... there's another list for you

[Janeerp]

Thanks for this post. I am about to start on this and am staying positive by thinking about how much better I could feel. Your post has really helped that 🧡