O & V Treatment - ALC Doubling

[C0llin]

Hi,

this is my first post on this site. It's been a great source of hope, support and enduring posts that have kept me informed of what others are going through so i thought i'd do the same and share my short 'story'.

I was diagnosed 12 months ago with CLL with an ALC of 19 in Nov 2020. Fast forward 11 months and my Lymph count exponentially (but consistently) rose to 127 last month when my Haematologist decided to start Obinutuzumab & Venetoclax treatment. My ALC doubling time was around 3 months at that point.

My lymph nodes were >10 cm axilla and >4.5 cm around my neck. Uncomfortable! My ALC then rose to 170, a rise of 43 in only two weeks prior to my first infusion of Obinutuzumab.

I have had 3 infusions of Obi now, over the last 3 weeks; some hiccups but:

My ALC is now 1. Yes one!

My Lymph nodes have shrunk by approximately 80% already. I feel like a new man already.

Venetoclax starts in a week or so but I am so amazed at how effective the new generation of drugs are.

It's nice that we have treatment choices here in the UK of either a time framed treatment such as O &V or a long term treatment such as Acalabrutinib but more importantly how effective they are. I opted for the 12 month Obi + V course as i'm 51.

That's it. I feel great and just wanted to share my first steps to, hopefully, mRD.

[Newdawn Administrator]

Welcome COllin and what an inspiring first post! It’s a full potted history from diagnosis, fairly rapid progression and a very successful ending!

Like you, I’ve been fortunate to experience the restorative properties of Venetoclax and it’s a real hard hitter.

Thanks for sharing your story and long may you achieve and remain in remission.

Newdawn

[Jacksc06]

Hi. Welcome to the family. Pleased to hear that you are doing well.

[BobbyFour]

Thanks for sharing your good news!

[cllady01 Former Volunteer]

C0llin, welcome to the site and so happy to have your report with V&O treatment as I am 3 infusions down and 3 to go, fully ramped up to 400mg V and so far so excellent as far as how I am feeling and experiencing daily life. Best wishes as you continue.

[Lilsa]

That is a wonderful result COllin. Currently there seems to be quite a crowd of us on O & V treatment. I have almost completed the first cycle and will have another O infusion on Monday when I also step up my V to 50mg.

So far no problems and the lymphocytes are dissolving away!

Let’s hope we all do remarkably well with this great treatment.

Lilsa

[Potplant]

Thanks for sharing this C0llin. I'm pleased for you - feeling great is what we all aspire to!

My own story is of Sjogrens Syndrome (also driven by B lymphocytes) and a less rapidly progressing CLL which has for years led to debilitating fatigue and increasing malaise. I'm halfway through O&V treatment and have just started to notice days when I feel more well than I have for ages. The fatigue is still a big problem but I'm optimistic this will gradually resolve, with the next few months of Venetoclax and a gentle exercise programme.

Best wishes to you going forward! We're so fortunate in the UK to be offered this treatment on the NHS.

Linda

[stevesmith1964]

Hi,I was diagnosed 12 months go at stage 4 with 100% marrow infiltration and lymph nodes the lite up the PET scanner like a Xmas tree. I went straight to Obinatuzamab and Ibrutinib , I was in uMrd within 240 days. I am now on acalabrutinib and will be on it for ever or until it stops working. BTW... I had no symptoms and have never had a raised white count

[JLJC]

That is so wonderful 💪🏼💪🏼💪🏼