Sharing the good news

[Korstiaan]

This is my first post on this very interesting and helpful website of a marvellous community. I am attending a trial with the new medicin Venetoclax and I’d like to share the good news with you (and I hope you will forgive me my mistakes in using the English language )

I live in the Netherlands, 57 years old and diagnosed with CLL in October 2010. I started with a succesful FCR treatment in February 2011. After ending this treatment I started living ‘normally’ again, hard working, sports and enjoying life. But in February this year my WBC counts started being higher than normal and moved rapidly upwards in the next months. A second FCR treatment seemed to be the most applicable treatment. But my wife read about studies related to ABT-199 and we asked my doctor if he knew any studies in the Netherlands. And to our surprise he told us that there was a study starting in the Erasmus Medical Centre in Rotterdam. This study compares Venetoclax in combination with Rituximab against Bedamustine in combination with Rituximab (Murano study). After some research on the internet, we decided to attend this trial.

After some medical checks I started in August with a very low daily dosis of 20mg Venetoclax. Because of the risk of TLS I had to stay for three days in hospital. A week later the same procedure, but then with 50mg a day. Everything went well and so the next weeks my daily dosis went up to 100mg, 200 mg and finally to 400mg. After those weeks the combined therapy started. I got an infusion with Rituximab (combined with Prednison to prevent side effects). Yesterday I had my 4th infusion of Rituximab. I have to take the Venetoclax pills every day for a period of 2 years.

Until now everything is going very well. My WBC counts went down from 253 in August to 56 in the beginning of September and to 2.7 (but still 57% neutrofills) at the end of September. And my HB went up from 6.3 (mmol/L) to 8.9 yesterday (I noticed that you use an other unity for HB). The results of a bone marrow biopt four weeks ago showed a CLL-volume of 0.6%!

So I returned to work as from the beginning of November, do sports (tennis and field hockey) like before and am enjoying life.

I realise that maybe I am not representative for each individual patient, but hope that these kind of medicins will make living with CLL a bit more comfortable for all of us.

Best wishes to all of you.

Korstiaan

[Newdawn Administrator]

A very warm welcome to you in the Netherlands Korstiann and your wonderful news is welcome and warming! Long may your excellent remission continue.

And your written English is excellent!

Warm regards,

Newdawn

[Bubnojay]

I'd like to welcome you too Korstiann, thank you for sharing your good news, always gives me a lift to hear of positive outcomes.

Your written English is just fine and I could not even begin to speak, let alone write in any foreign language, so very well done you.

Best wishes and have a happy festive season.

Bubnjays1

[prosecco1]

Hi,

Welcome to this site on a lovely,but very cold Scottish morning ⛄. Very happy to hear things are going well for you, we do like to hear good news here 😊.

Please keep us updated on your progress

Take Care

Elle

[Peggy4]

Hi Korstiann. Thanks for sharing this positive news. it gives us a. Hope. Your English is excellent. I have family in Denmark and find it very hard navigating my way around the language! Peggy.

[OzzieNick]

Great news, Korstiaan!

For people like me on W and W this is very encouraging to hear. Thank you!

Good luck with your journey!

Nick

[Hidden]

As someone with very high WBC counts (367 last Wednesday) but still on W & W and apparently 'stable', this is very encouraging news. Thank you for posting and good luck.

Maggie

[Firefly14]

Great news thank you for sharing and congratulations!

[splashsplash3]

The good news keeps coming in about ABT-199 - Venetoclax. Please keep sharing your journey with us as you CLLers on trials are clearing the path ahead for the rest of us.

[Hidden]

Congratulations! Wishing you continued good health.

[buckinhard]

Hi Korstiann, so happy to hear your great success !! I was on ABT199/Gazyva . I'm just 1 month away from completing the trial and have had great success also. I am finishing 1 year on ABT199 and you are doing 2 years on ABT199. Wonderful news for you !!

Denise

[Prudie]

Very pleased for you! I'm also on Venetoclax but with obinutuzimab. Have a blessed Christmas. Debs

[jtaeross]

EXCELLENT!!!! Thank you for sharing! Your story gives me hope. I'm starting Venetoclax tomorrow.

[Peggy4]

Welcome Korstiaan. Thank you for sharing your good need. It gives us all hope.

Peggy

[Newmeds]

Hi Kortiaan,

By searching on venetoclax, we stumbled on your post telling about you haven been in the dutch trial for CLL parients with V from 15-17 in the Netherlands. I’m also from the Neth, and being treated at the AMC. I am very interested how you are doing after the trial at this moment. My particular problem is a low HB and I am wondering how that responded for you on V as I read that some patients on V don’t see a higher HB although the bonemarrow is clearing. I hope you are doing very well and that this trial had a very positive outcome for you. Any experince you had being on trial and after would be greatly appreciated. I am very much looking forward to be hearing from you. With kindest regards

[Korstiaan]

Hi Newmeds,

My blood counts are very well. At the end of February my HB was 9.2, while it was 6.3 in August 2015. I also had a bone marrow biopt done, and it showed a CLL-% of 0.1%.

I am doing very well at the moment. No single medical problem at all! Most of the times I do not even think of having CLL. So, I am a very happy man!

What treatment do you have? Did or do you attend the Murano Study as well?

All the best,

Korstiaan

[Newmeds]

Wow, that is really good to hear! 🙏 I have Waldenstrom where I found my only option was chemo in frontline, although IB has been designed to be the first WM medicine, it was not available to me in frontline. I refused chemo and ended up being blood transfusion dependent with HGB 4.4 ( dutch ) low 7 (int) through a miracle we found Venetoclax and my recovery has been a dream ever since. Now three years into VEN and still feeling really amazing. Bonemarrow involvement in the first year down from > 80% to < 15%, IGM drop from 3760 to 3 and HGB from 7 to 15.4

Strong advocate for access to targeted medicines from frontline on, for our orphan bloodcancer, and a voice for the patient and a personalised treatment approach. Wishing you continued good results and the best of health!!!