In RMH Sutton in the UK as an inpatient.
Comfortable and well looked after.
Had a PET scan and now hooked up to saline drip for hydration.
Venetoclax ramp up day one starts tomorrow.
What can I expect. Will I feel different?
Obviously TLS is the big worry but apart from that wondering if I'm going to experience any other side effects. What do you remember of your first dose of this drug?
Thanks
I’ve been on Venetoclax since April last year and have found it to be a largely trouble free medication. I had three overnight stays on the ramp up (UK) but only because my phosphate levels were slightly raised. I can’t remember any significant side effects except a curious fullness in the ears. The final dosage caused mild nausea but it only lasted about an hour. You won’t feel any different.
It’s an excellent treatment but make sure you drink masses of water!
Good luck!
Newdawn
Thanks. At the moment the schedule is another hospital stay next week.
The biggest issue I had was 8/10 hrs sitting around the Day Unit and then finding out I was being admitted due to the phosphate level! Very tedious so probably best to have scheduled overnight stays.
It’s only for 5 weeks and very much worth it 😊 It’s the superstar of treatments and I’m sure you’ll do really well.
Newdawn
Hi. It's reassuring to read your post as I'm due to start Venetoclax any time soon. I was to have started on March 11th but Covid prevented that. My doc wants me to stay in for 2 nights minimum (I've got masses of abdominal nodes)
But Newdawn, what is only for 5 weeks? Please enlighten me! Good to hear that you're doing so well.
Best wishes Jeff
The 5 weeks refers to the ramp up time as the dosage is gradually increased and you go onto full therapeutic dosage;
‘The VENCLEXTA starting dose is 20 mg once daily for 7 days, ramping up weekly to 50 mg, 100 mg, 200 mg, and finally 400 mg once daily.’
Best wishes with your treatment,
Newdawn
Thanks, Newdawn, were you hospitalised on each ramp up? I'm curious because my doc said I'd be admitted a couple of times for 2 nights. She's due to phone today for my consultation so I'll have to ask her. Thanks again. JP
No I had 3 overnight hospitalisations during ramp up but not because I was high risk for tumour lysis syndrome. Having been on Ibrutinib, I was quite low risk but my phosphate levels were a little high after 3 of the blood tests.
I think my Unit were remiss with hydration advice and I could have avoided this with IV saline (which they eventually gave me).
Newdawn
I’m in the US so for me I was not hospitalized. I did the ramp up, I had blood tests a couple days in a row. I had no side effects. But I was sure to drink lots and lots of water. I didn’t feel dizzy or woozy or strange. Just had to go to the bathroom a lot. LOL
Good luck
-Sally
My experience was day ward visits only with no need for overnight stays, although I did have to have an additional blood test one evening as my phosphate levels were elevated. Only side effect was diarrhoea during the ramp up. I had neutropenia subsequently and have taken 200mg daily since November 2018.
I was wondering if this is your first line treatment or if you have had f r or something else first? I'm in uk too and have read good things of venetoclax so was wondering when it's available (or perhaps just if you have insurance?)
Yes I've had FCR 3 years ago. I think Venetoclax is given to relapsed cases like myself or for those where first treatment didn't work.
It is on NHS .
If you are still on watch and wait it may very well be the standard for first line treatment in the future. But that's just a guess.
The longer on ww the better as these drugs get better each time there is a new discovery.
Thank you it looks a great medicine so am sure it will work out for you
I started taking Venetoclax at the end of March. The ramp up was disturbed by Covid; I went up to 50mg quickly and then stayed there for 6 weeks because my doctor wanted me to avoid outpatient visits as the hospital focussed on getting ready for a Covid surge. I re-started the ramp up at the end of April and have been on 400mg since June 4th.
My side effects have been minor, some dizziness, itchy skin (particularly after showering) and some nausea. However some of these side effects could be attributed to Allopurinol or Aciclovir or the combination. I drink lots and do not relax until I hit my 2 litre consumption mark, some days it's more than 3 litres. Numerous pit stops!
Each ramp up was easy for me, no problems. My Neuts and Platelets are low but not alarming, biochemistry is fine and Lymphs are in the normal range. (first time since before diagnosis in 2002!) The only downside is waiting around to have blood drawn to meet the Venetoclax protocol.
We are hoping to restart the Obinutuzumab infusions in the coming weeks. I had one two day infusion and after a strong reaction we delayed for a couple of weeks and then Covid forced a change of tack. Hope that it goes well for you.
Michael
Hi. All good wishes to you for your treatment. I'm due to start on Venetoclax any time soon. Please keep us posted as your treatment progresses. Good luck!!
Jeff
All being well, you shouldn't feel any different. The key is to drink plenty of fluids, if you can >2.5 litres per day. I have been on V for 3 years and my main problem was being neutropenic for most of that time.
Good luck.
Well. Mixed signals this morning. Nurse says V not confirmed yet till Dr seen pet scan. He comes in and says they want to biopsy my armpit node. I express my concern about transformation so he goes to talk to consultant. Consultant says no need for a biopsy as scan summary says no evidence of high grade transformation. Lots of orange activity but no white apart from brain so V going ahead.
Me being me thinks consultant reversed decision cos I had constantly showed concern about RT and she didn't want to worry me and will go ahead and see what happens with V. The things that go through my head! I need to cling on to no evidence of high grade transformation.
My tumours are very large on my neck and armpits. So I have been told to expect TLS but am being bombarded with fluids. Will be in beyond my two days.
It was the tumour sizes that made them bring me in for treatment so they could hydrate me before treatment.
So just got to sit tight now and as the Dr says let them do the worrying 
Thanks for all the replies.
As you can see from other replies any issues with ramp up have been mainly minor but neutropenia can happen and be either temporary or ongoing.
I did my ramp up at Barts 2 years. ago. Overnight stay first time in case of TLS but no problem. I developed neutropenia at week 3 and it has persisted despite final dose reducing to 300mg.
I therefore have G-CSF , usually weekly but frequency adjusted according to neutrophil count.
Good luck
Charlie Girl
Update- treatment delayed for one day due to giving me alluprinol this morning. They want to give me some other drug whose effects cancel each other out.
So stuck here but at least I've been detached from my friend the drip until tonight.
So will kick my heels for another day
Hi I’m in Canterbury U.K. I have been on venetaclax since November I had first tablet went home for 6 hours went back for blood test everything thing was all good never had a problem with it at all even during ramp up great drug to be on I’m also on Acalabrutinib as part of a trial good luck
You did well being allowed home. I was made to remain on the Day Unit after taking the meds and then again for the re-test! It averaged 8 hr long days and 3 times I was then taken up to the Ward early evening when the test revealed elevated phosphate. I was one of their first Venetoclax patients on a trial and frankly I think the monitoring was excessive as no testing or obs were done during those 6-8 hrs.
I did however get to eat lots of nice cakes in the hospital canteen! 😉
Newdawn
Thank you for your update. Do not spend any time thinking about RT. To be on Venetoclax is a blessing. It will give you years without worries. Please keep me posted. Thank you again.
Are you taking alluprinol? 300mg? How long are you required to take it for ? Thx
Yes I am taking Alluprinol.
I believe it is taken for 5 weeks only.
I am now on 400 mg Venetoclax from today. It's been ok. Lowered my white count considerably but not done a lot to my swollen lymph nodes.
Have to have an excision biopsy of nodes under my armpit next week to check disease hasn't transformed.
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