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
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TheFlyer
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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 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%.
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.
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.
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.
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
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..
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.
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...
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.
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