Initial Treatment - obinutuzumab And Venetoclax

[Theplodder]

hi,

I’m starting CLL treatment this week due to very low haemaglobin count. This will start with obinutuzumab with venetoclax to be added in 3 weeks.

Are these the standard drugs used? I’ve been due to start treatment previously (2 years ago) and the drugs were different then. Appreciate things move quickly.

Thanks all

Alan

[Skyshark]

V+O is the short duration standard of care for CLL. It was approved by NICE on 09 December 2020.

When I was starting treatment Easter 2022 I asked how many they had given V+O to at the hospital I attended. I was told about 40. It must be well over 100 by now.

The first 8 weeks are quite intense and a lot of work for doctors. The alternatives two years ago were Ibrutinib or Acalabrutinib, these are covalent BTKi drugs and Zanubrutinib has been added recently. BTKi drugs are very much easier for doctors to manage with consultations every three months.

[Theplodder in reply to Skyshark]

Thanks Skyshark…. See my response to Poodle2 below, a good start so hope it continues!

Thanks again.

[Poodle2]

Excellent drugs and very effective. I also had O+V, started in July 2022. Also had low Hb. Read my posts if you feel like it will help, I kept writing regular updates. The first two months were really full on but I felt better immediately, after the first infusion. It was like magic. Especially my energy levels, my Hb was around 85 long term and it was unbelievably hard to just go about my daily things. It helped immensely. I did need two blood transfusions, hope that won't be your case but just so you know, it can happen if your numbers are low to begin with. All the best to you, you will feel so much better. Let us know how you get on.

[Theplodder in reply to Poodle2]

Thanks Poodle 2, much appreciated.

My Hb was way down at 62 so yes had to have the blood transfusions before starting with O. Had an immediate bad reaction on the first attempt but managed to get the full dose in over 2 days including further blood transfusions. The good news is that the day after my HB is up to 92 and my whites are way down from just below 300 to 66! Feeling totally wiped out at the moment but couldn’t have asked for better immediate improvement.

[Poodle2 in reply to Theplodder]

Amazing! I told you so!🙂🙏🏻the transfusion brought your numbers up. It might dip again, especially once you have your next O infusion, but it is normal. I found it very frustrating but I think from my third infusion, my Hb started to go up and never dipped again. Once the O clears up your bone marrow, it starts to produce new cells on its own and you shouldn't need blood transfusions anymore. How amazing is your lymphocyte count! Honestly! Make sure you drink a lot as it's really important at this this stage to prevent TLS. My lymphocytes were around 145 and on day two they were around 8? Something like that. Just spectacular. My spleen was 21cm and 10 days later it was normal size...all my nodes disappeared over night after the first infusion...I honestly felt like it was a miracle. The fatigue will be the worst after the infusion day, rest and take it easy. Allow your body to do all the hard work, eat well, you will need extra nutrients. You will smash it❤️

P.S. keep checking your temperature and anything over 37.8, contact your team immediately and go to the nearest A&E - it's a precaution as there is a risk of sepsis, you would need antibiotics within an hour or arrival and cultures done. I'm sure they advised you about all of this and gave you a little card for chemotherapy patients? Good luck with the next round.

[Skyshark in reply to Theplodder]

It gets better. They started around 2pm and within 5 minutes I was hot and dizzy, there was a 2 hour break for blood culture. It took until 0:30am for them to get the first 100mg/100ml bag into me at half rate. Later that day the 900mg/250ml bag just slipped in without any reaction.

Cycle 3 I was on 90 minute rapid rate infusions.

[SEB0607]

hi there, just to say I am into my 11th week on O&V and like Skyshark mentions the first 8 weeks were intense with time in hospital particularly if you live a distance away but the results for me have been magic and even though I thought I felt fine before I now feel amazing. Full of energy and so far no side effects. Like you I started due to low haemoglobin. I wish you good luck in your journey and hope we both sail through this and get to the other side. My consultant is expecting a long duration post treatment before further treatment is required so I am looking forward to August next year and putting CLL to the back of my mind for some time.

[Theplodder in reply to SEB0607]

Thanks Seb…. See my response to Poodle2 above, great improvement after my first session do hope that continues! All the best to you, I hope everything goes to plan.

[Nana1961]

Good morning! I had the option to start V&O or Zanu August 2024. I went with Zanu due to the convenience and the fact I don’t like needles! Been doing good….. more energy. Sone side affects diarrhea, back pain and bruising. All and all doing great! It’s even delivered to my house from the cancer institute. Good luck with your treatment

[BigDee]

Hello Theplodder

I have had B+R and V&O, both of which are time limited treatments. Every time I have treatment it is something new, which is nice to have so many options. Blessings.

[Nana1961 in reply to BigDee]

Hi,

Once you finished your V&O treatments, did the fatigue go away?

[BigDee in reply to Nana1961]

Hello Nana1961

I did not have as much shortness of breath, but the fatigue was little better, not much. Blessings.