Question about Venclexta

[Ndsa]

Hello, my Mum is starting tomorrow isA venclexta and wanted to ask did anyone take it home ? Or it’s necessary to be hospitalized? And is everyone getting bad side effects? Im ver worried. Thanks in advance 🙏

[81ue]

I was hospitalized due to the doctor wanted to monitor with frequent blood tests every 4 hours and thru the night. When nothing bad happened, I was released to ramp up the rest of the way at home. I think your doctor will have to decide if it is safe to ramp up at home. I only have slight nausea if I don't take the pills with a fatty food. I had more side effects from imbruvica (painful leg and foot cramps, dry flakey skin). I've also had continuing fatigue since I was diagnosed, both before and after taking drugs, and I feel like I had more energy while on venetoclax.

[Ndsa in reply to 81ue]

Thank you so much for your reliving reply. Hope you stay in good health

[AussieNeil Administrator]

Venetoclax/Venclexta is generally very well tolerated. Remember that members don't tend to post when treatment is going smoothly!

Because Venclexta is such a powerful drug against CLL, patients are assessed for their risk of Tumour Lysis Syndrome and if their tumour burden is large enough to put them at risk of their organs being overwhelmed by dying CLL cells, they are monitored in hospital during the dose ramp up until the risk has passed. This post has answers about the process:

healthunlocked.com/cllsuppo...

Other members have shared their experiences of going through the ramp up.

Neil

[thb4747]

I did my ramp up as an outpatient in the hospital but never had to stay overnight. This is important because you have to be closely monitored throughout the whole 5-week process. On one of the days my potassium levels got out of whack and I had to wait an extra couple of hours while they repeated blood tests. I don’t believe you could safely go through it at home.

[AussieNeil Administrator in reply to thb4747]

You can safely go through the ramp up at home if your tumour burden is deemed low enough. I was allowed to do this and had no problems going through the ramp up.

Neil

[thb4747 in reply to AussieNeil]

I was on an Abbvie clinical trial so I think the protocol said the drug had to be administered in the hospital.

[AussieNeil Administrator in reply to thb4747]

I too was on a clinical trial, but taking acalabrutinib and obinutuzumab before commencing the venetoclax ramp up sufficiently reduced my tumour burden so my clinical trial doctor said I didn't need to attend hospital.

Here is the official risk assessment protocol that includes the process by which it is determined whether a hospital admission is required:

venclextahcp.com/cll/dosing...

Neil

[thb4747 in reply to AussieNeil]

Thanks Neil. All history for me now.

[Annie1920]

I have been on venetoclax since June and never been in hospital.. Side effects have been minimal.. Occasional nausea which responds well to meds I have been given to hold by me that's all. The ramp up involved a lot of blood tests and some waiting in outpatients but no overnight stays

[roszika]

I strongly recommend hospital stays as the dose has to be ramped up. From 20 mg to 400ng over 5 weeks ,The reason is when veneteclax was first used high doses were given at the beginning. and some patients developed tumour lysis syndrome a very serious condition that affects many vital organs .So I was ramped up 20 mg week 1 50mg week2 100mg week 3 200mg week 4 to 400mg finally week 5 and each week for 5 weeks stayed in hospital for 3 days each week and cane through with flying colours-that was April to May 2019 then I stayed on 400mg till April 2021-now I am in deep remission-that is the recommendation-google it -you cannot take the chance to ramp up at home as blood tests are taken every few hours while in hospital-one needs to be monitored -cheers-from a retired pharmacist

[AussieNeil Administrator in reply to roszika]

The current ramp up protocol with hospital admission where necessary, was developed because sadly three very early venetoclax trial participants died from Tumour Lysis Syndrome. The trial was halted and then only restarted when this modified protocol was designed. I'm not aware of any further deaths since this modified protocol was introduced.

Neil

[Oleboyredw-uk]

I was on a trial (CLARITY) for relapsed/refractory patients using Ibrutinib and Venetoclax. In terms of side effects. I had none I could attribute to Venetoclax.

My tumour burden put me into the medium/high risk so I overnighted in hospital for the first and second ramp-ups. After that the drugs had been so effective I did not stay in for the other ramp-ups. In both cases I was in for one night only. The risk I comment on is effectively risk of Tumour Lysis Synndrome (TLS). On the tests they carried out during the two overnight stays there was no evidence of TLS. Whilst I was hoping not to have to stay I realised that I was in the right place just in case anything went wrong.

I have always said that Venetoclax is brutal on the CLL but gentle with the patient based on my experience. As I have no medical experience my comments are experience based. I trusted my medical team, I would just suggest asking questions of yours to satisfy yourself.

Also check out the link Neil put in one of his replies, very useful.

[Psmithuk]

I have had outpatient appointments for the ramp up, felt fine most of the time but closely monitored with frequent blood tests. I’ve been on the full dose for a while now, nauseated occasionally, but feeling generally much better. Platelets were quite low, but think they are going up again now.I am very grateful to have access to this strong drug, with very little in the way of unpleasant side effects - as Neil says, we don’t post so much when things are going well!

Cx

[Sojomama13]

Hi, It is important to preface by saying that I am on a clinical trial of Acalabrutinib, Obinutuzumab and Venetoclax. I first started with Acalabrutinib and did a few infusions of Obinutuzumab prior to starting the Venetoclax. I was ramped up at the hospital as an outpatient, I was not admitted because I was not a risk for tumor lysis. Best of luck!

Sandy

[Pokerguy]

Here in the states, most take “ramp up kit” at home as hospital stays are cost prohibitive. I personally did my ramp up (10 mg to 400mg) at home with only a few side effects. Some nausea at the beginning but found the meds more tolerable with a decent size meal each time I take them. I’ve been at 400mg for 4 weeks with almost no nausea. Also provided Allopurinol for gout which I did experience but was due to the fact that I didn’t have enough water intake to flush out the lactic acid buildup. Bloodwork was taken the day after each increase in dosage; by 7 weeks in my WBC is normal. Ingesting daily 90-100 oz of water keeps the gout away.

[beanlake14]

I took at home after I'd already done ublituximab. Since it will be ramped up each week, I imagine, I would think home would be fine. Make sure she is on allopuranol. She might have a few minor stomach issues, but this is a great drug.

[Smakwater]

Ndsa,

We all have an individual profile. It is very important to include in your consideration the perspective of the attending physician, as they are suppose to be the most highly trained, and be the most familiar with the patient.

In my case, I was pre treated with obinutuzumab to lower the tumor burden to a safe level before taking venetoclax. I had no severe adverse responses, however, I have read on this forum that others do not tolerate even the lowest doses.

I took all of my scheduled venetoclax at home.

JM

[DelrayDave]

Because I had been on ibrutinib for years there was zero tumor burden, or close to it. I did the ramp up at home with weekly blood tests. I am held at 600 mg. as that is doing the job. Whether or not he will go to 400 I cannot say. There were side effects for the first couple of months. Nausea has mostly gone. Still tired. But the ibrutinib side effects are greatly diminished.

David