Hi @Est30 and @Erica, I start V&O treatment on Thursday 17th June, I too don’t have an awful lot of info (apart from the plan and the possible side effects) but my treatment will be;
Wednesday, blood test.
Thursday, IV Obi One (nurses pronunciation🤔) this week only 100ml IV, overnight stay to monitor me, then the last. 900ml the next day, after that it is 1litre every Thursday.
Friday, blood test.
Repeat 3 more times, this is cycle 1.
Cycle 2 is IV Obi One, same routine as above (bloods We’d & Fri) but with Venetoclax and a weekly Venetoclax dosage increase, repeat 3 more times.
IV Obi One then stops and it is 12 months of Venetoclax I expect with blood tests too.
I will let you know (if you’re interested) how things are going. Good luck with your treatment @Est30
For info, I have been advised by a couple of people to take all of the anti sickness tablets on offer, apparently one will need them. The other thing is how critical my haematologist and the nurses were about avoiding infection and the raft of infection indicators, especially monitoring one’s temperature and how important that is only if feeling a bit unwell, i.e no need to check it if one feels alright, it’s only if feeling unwell. I assume you’ve received the same info.
Gosh @Billy1mate you certainly have your treatment plan.
I find all medical appointments, whether for consultations, tests or treatments, so draining emotionally, physically and practically so please be kind to yourself.
Please let us know after the 17th June how you are and how you are feeling, we are always here to support you.
Take lots of care and also stay safe.
Hi @Erica@Est30, quick update turned into a 2 night stay for my 1st cycle of Obinutuzumab and my white cell count has dropped from 240 to 63 (healthy is 4.5-11), I was gobsmacked it has had such a massive effect so quickly. I have a selection of tablets to take whilst on this Obinutuzumab cycle to bolster/ reduce the chance of picking up an infection, I’ll keep you posted. Take Care.
PHi @Billy1mate. Are you at home now or still in hospital? It’s amazing how things can change so quickly. I’m glad they are looking after you and you are in the right place. Sending lots of special wishes x
Hi @Billy1mate thanks so much for the update.
It is so, so surprising as you say that the 1st cycle can have such a massive effect.
Take lots of care of yourself and be kind to yourself,
Yes, please keep us posted.
Has anyone else had such a massive effect so quickly?
Hi @Nichola75, I was only kept in for 2 nights, there wasn’t a bed until the afternoon so everything moved right culminating in 2 night stay instead of 1.
Hi @Erica i was very surprised at the massive improvement in my blood after the Saturday blood test but it gets better.
I had a blood test last Wednesday before 2nd treatment on Thursday and the level was 4.6, down from 63 (4.5 - 11.0 is normal), 2nd treatment went ok, I did not feel ill before treatment but I have to say I do feel better, odd though that may sound and difficult to explain, maybe I was ill before but it was a slow decline so I did not notice. The staff on Fortuneswell at Dorset County Hospital are all brilliant and have been really kind and helpful.
Oh @Billy1mate, so it was 2 nights stay in the end. I am so pleased with your news and I never realise how ill I was feeling until I start to feel better, isn’t it lovely to start feeling better.
A great big thanks to the Fortuneswell for looking after you so well and being so brilliant, kind and helpful from me too !!!
I started my obutumazab Feb2nd and it has been fine apart from the Venetoclax sometimes makes me feel nauseous …no rhyme nor reason and Ive tried all sorts of ways to take it with food, before food, after food …sitting down standing up etc etc but nothing bar the anti sickness tabs touch it really …I dont need them every day though
My blood counts are back down to within normal range now which is rewarding
Hi @Annie78, feeling nauseous is yukky and rotten and you certainly tried everything practically to alleviate it, I know that I try to avoid tablets, but if they work I would go for them.
Good news about your blood counts.
Great to hear from you, keep posting.
Yes thank you well but I still cannot pin down why some days Im nauseous and others not …Ive tried taking them before breakfast, with food after food at lunch time but no rhyme or reason to it …frustrating !
I started on obinotuzumab on April 16th I had a problem with the first infusion, my blood pressure dropped off the scale and treatment was suspended for 15 minutes, restarted and haven’t had a problem since. I did the normal ramp up with venetoclax and have had no problems with that other than a bit of itchyness mainly on my scalp. I feel much better, I thought I was on the way out in April but, I now have much more energy and can walk 5 miles quite comfortably
Bit late with an update, my apologies. Last I said I was waiting for the nausea to start, that has not happened.
I have finished the Obinutzumab infusion cycle and am now up to 400mg of Venetaclax. Last Friday was my next cycle (now monthly) Obinutzumab once a month with 400mg Venetaclax daily.
One thing I don’t think is considered is the amount of ancillary medication that goes with the treatment, bear with;
My Intravenous visits comprise of 2 Paracetamol, Dexamethasone, anti-histamine, saline and Obinutzumab, saline after each bag to flush the line.
Tablets during the week.
Omeprazole, Allopurinol for 28 days(iirc), anti-biotics, Aciclovir (twice daily) and Venetaclax (4 daily).
And of course don’t forget to drink at least 1.5 litres of fluid each day.
It is manageable and easier than many other treatments I expect but there is a bit more to it than just the IV and Venetaclax, plus the pin cushions that ones arms become from blood tests and cannulas. I have found taking biscuits in every week for the nurses makes no difference:wink:.
It might seem odd but I look forward to my treatment as it is a change of scenery and the staff at Dorset County Hospital have been absolutely brilliant.
I also concur with @Mickbrit , I have more energy the day after treatment and am able to cycle but the night of IV I get little or no sleep because of the Dexamethasone (apparently).
Hi @Billy1mate, thanks for the update and taking the time and effort to write out all the ancillary medications etc.
I am so glad that the staff at your hospital are absolutely brilliant, as we read on here some others do not have that experience.
I am sorry taking biscuits in doesn’t make any difference, bribery always works with me !!!
Take lots of care of yourself, you and your body are going through a lot.
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