Nearly 6 months on Venetoclax!

[Natali]

I realise it has been a while since I last posted...Mum is nearing 6 months on Venetoclax and her health has improved so much that the beginning of this journey seems almost unimaginable. She has put on weight, is very active and independent again. Side effects: her platelets continue to sit around 20 and she has a weekly transfusion for this, and filgrastim injection, and immunoglobulin transfusion monthly- however in recent weeks this has stablised along with her neutrophils so her body may finally Be making its own again, she can't really taste salt in food so there have been a few exciting meals ;), occasional pain in areas where her largest lymph nodes were, headaches have subsided, and some joint pain though we are not sure if this is the drug or old age. Her recovery was perhaps slower than most on Venetoclax however she was incredibly unwell when she started. It is truly amazing and we are incredibly grateful that she has recovered so well. She is still not on the highest dose however I think that as long as she is experiencing low platelets and her counts are within a healthy range this will not be changed.

[Spacee]

We are fairly new here (hubby with CLL) it is always encouraging to hear good news

Spacee (Linda)

[UK-Sparky]

Your mum must be delighted as you are, hope the improvement continues

Milton Keynes Marc

[PlanetaryKim]

Congratulations on your mom's progress!

kim

[Nicebaps1]

Sounds really good. I'm in the UK and started it 7 weeks ago and am on full dose (400mg a day). I have 2 units of platelets every other day as my platelets are <10. HB level avg 83 but I feel fine with no side effects. I hope your mum continues to do well.

[Natali in reply to Nicebaps1]

Sounds really promising, mums HB increased steadily after about 3 months - once the Venetoclax had cleared enough CLL. I hope your platelets increase soon - immunoglobulin transfusions may help too.

[pkpayne]

Always so happy to hear progress! Thanks for sharing!

[casanova]

So pleased to learn of your Mum's improvement: fantastic for you both that she has her life back. I am nine weeks into my treatment on Venetoclax and I too am feeling very well.

This site was a huge support to me when I was about to start on Venetoclax and therefore I will post my update this week. Good news is always welcome.

Maureen UK

[Cindy1462]

I hope your mum is still doing well. I have just started venetoclax and was searching the site for good stories. I feel very nauseous at the moment but it looks like most people don’t suffer like I am with it. Your mums story has given me hope that one day I will feel better. Best wishes Cindy.