V and R Treatment Update

[Sanders9]

After your helpful responses to my scared post I wanted to give you all an update. My husband ramped upto the full 400mg of Venetoclax and his 3rd Rituximab infusion is later this month. I am pleased to say that apart from a week 3 ramp up blip where his body dumped his defective cells quickly, making him feel like he had flu. We avoided hospitalisation and it has been fine since

He looks and feels fine but is neutropenic and gets a bit tired late afternoon some days but otherwise no issues. I was so scared at the start of this treatment and I am relieved he is doing well

I hope this post gives some comfort to those about to embark on this treatment. We are always aware of what can go wrong so I am pleased to be able to share this positive update. CLL responses are so different for everyone and I hope your experience is as trouble free

We continue to take it one day at a time but are grateful for where we are today. Thanks so much to all of you who responded to my previous post. I am proud to be part of this community

[ABP45UK]

Wishing your husband (and you!) all the best through Venetoclax and Rituximab treatment. Your/his bio story is almost the same as mine ...only I was hoping to go on Flair trial but had to urgently start treatment in July 2018 which was FCR back then. My platelets are dipping slowly ...but still over 8O and only once collapsed completely to 3 but swift steroids and immunoglobulin treatment in hospital.meant they bounced back up so I susoect I too will be starting V + R shortly. Keep us all posted and hope he continues to have a smooth ride through second line treatment.

[Sanders9 in reply to ABP45UK]

Thanks for your reply and good wishes. I hope you stay well and have a smooth journey when you get to V and R. I am always happy to provide information and support for this group when I can.

[Spark_Plug]

Thank you for coming to us when you needed it most, that's what we are all members for - information, a listening ear, viewpoints from other areas.

Imagine when you will be able to share with someone your tidbit! 🙂

Good health to both of you.

[Sanders9 in reply to Spark_Plug]

Thank you

[Gsxjax]

I'm glad it's going well for your husband and thank you for your report. I'm on the cusp of treatment and having to decide if I am going to have it. It's scary to read the literature of what can go wrong. I have other co morbitities which don't help

[crystal3333]

Hi, I am on this treatment V+R and so far have not had many problems apart from low iron so had to have 2 iron infusions . Then low phosphate so had to have 5 phosphate infusions then medication. I have 10 months left on this treatment. The fatigue is a big problem for me but I had that when I was on my other treatment Ibrutinib so it might not be to do with V +R I hope your husband does well, I’m Sure he will. Good luck

[emg112253]

Great News! I also had just 4 infusions of Rituximab and a year later it has improved all my numbers. A true miracle drug. 🙏❤️‍🩹🙏

[Analeese]

Thank you for the good news. It is always wonderful to hear from someone who is having a successful treatment. I hope everything continues well for you and your husband and no bumps along the road.

[Sanders9 in reply to Analeese]

Thank you

[JT67]

Thank you for this positive news. I am a few weeks behind your husband, being only on 100mg Venetoclax and yet to start Rituximab and was wondering how things were likely to develop. Keep providing the updates, please!

[Sanders9 in reply to JT67]

Wishing you well as you progress your Venetoclax ramp up. My husbands advice is drink 2 to 3 litres of water a day, monitor your temperature regularly and prepare for the odd day where you feel a "bit off it"

[holeinthespeaker]

Great news! Seems I have to start my treatment next year, what makes me a little anxious right now. Thanks for sharing.

[Sanders9 in reply to holeinthespeaker]

Thank you. Apprehension around treatment is a challenge, but at least there are effective treatments available. Feel free to share any concerns on this platform as we help each other