Hello there. I’m currently on 50mg of venetoclax, on the ramp up stage. Just wondering, how many people on this forum are on 400mg and tolerating it well? I’ve heard some patients need to go down to a lower dose.
2 Likes
Hi @ELGall1996
Not currently on Venetoclax although pretty sure I was on the 400mg when I was.
They built up the dosage a day at a time and monitored the impact. Pretty sure in my case started at 100mg.
Of course everyone is different and what they can tolerate varies.
Your clinical team will be looking at things very closely for sure.
Hope that helps.
2 Likes
Hello @ELGall1996
Welcome to the forum and thank you for taking time to send on your post
I’m sorry to learn of your circumstance, my heart goes out to you
I’m a Chronic lymphocytic leukaemia ('CLL') patient on active monitoring only - so I cannot relate to your situation, but as @DuncanB has suggested - your medical team are best placed to support you
There is a potential that some one with more similar situation may answer your question, but there is no guarantee.
Do take good care of yourself and do let us know how you get on
Kind regards
Mike
3 Likes
Thank you. The Doctors have been very good and I’m sure I’ll be monitored carefully.
1 Like
Hello @ELGall1996, it sounds like you’re in good hands, and I’m glad @DuncanB has been able to share a bit of his experience. If you’d like to hear from more people who’ve been through the venetoclax ramp-up, there’s an older thread here that might be useful reading: I’m starting treatment of Venetoclax and Obinutuzumab for CLL and would like to hear of others’ experiences.
Do keep posting as you go through the ramp-up and let us know how you’re doing.
Take care,
Ceri - Blood Cancer UK Support Services
2 Likes
Thank you for the messages. I’m just taking it week by week. Making sure I drink plenty of water and if I do feel unwell, my team are so helpful and understanding - I’ll contact them for advice. Lovely to read of other people’s experiences!
3 Likes
Hi @ElGall1996
I’m on 400mg venetoclax + Ibrutinib. I’m about half way through my treatment, hoping to finish around November. I found those weeks when we were ramping up the dose really exhausting and I felt sick most of the time. Then for another few weeks I was tired and nauseous . But gradually that has lessened. For me, just accepting that I don’t have the same energy and fitness level as ‘normal’ has improved everything. Take it easy, rest lots, eat what you fancy and don’t feel guilty about any of it.
I hope it all goes well for you, if you have any other questions just ask
Linda
3 Likes
Hi @Lindabee Just to let you know to reply to someone on here you just put @ in front of their name, like @ELGall1996
1 Like
It can be tough to accept that energy levels not like before for sure @Lindabee
Definitely a case of listening to your body and resting when you need to
Thank you for your message. It was very reassuring. I’ll see how I go when I’m on the full dose of venetoclax.
1 Like
@ELGall1996 I have Chronic lymphocytic leukaemia ('CLL'). I was started on Venetoclax as well as a drip for 6 xweekly doses of Retuximab back in December. The two together because I had very low haemaglobin. I understand it is unusual, at least here in Somerset. After 6 weeks I was just on Venetoclax which was gradually increased from 50mg and I am now on a full dose of 400 mg daily for the next two years. At first I felt a little bit nauseous but was given Metaclopromide which worked. Early on constipation was an issue, but doses of Laxido helped ease that. I am ok now. I think I may be fortunate but I’m tolerating the drug well and it is having a positive effect on my blood results. I saw my haematology consultant yesterday who said my blood results are now within the normal range.
I hope you find the same as your dose increases. Good luck.
1 Like
Thank you for your reply. It is reassuring to know that Venetoclax can be well tolerated. It is such a strong drug. I’ve been on it at 400mg for two weeks and I’m doing OK. Maybe a few upset tummies etc.
I hope the rest of your treatment goes well!
Kind regards
2 Likes
@ELGall1996 pleased to hear things are going well for you too. Drinking plenty of water is so important. Taking it easy if you feel tired. I can still exercise as I did before, which is great. I feel I need to keep active and eat healthily. Hardly any alcohol these days either! I have developed a taste for 0° lagers!
Good luck going forward.
1 Like