Ibrutinib / Venetoclax Journey

[Oleboyredw-uk]

I visited the Chrisite yesterday for my three monthly checkup. This time it was to the haematology department. For those new on here I’m on the Clarity trial (for relapsed refractory CLLers), started Ibrutinib Feb 2017, Venetoclax added April 2017, both drugs stopped June 2018 as I’d hit the targets for the trial which was supposed to be 26 months long. Now jyst being monitored and supplying data and blood for trial researchers.

A fairly short meeting yesterday as little to report or discuss. I’ve had two colds in quick succession recently. Dr had a good poke around feeling for swollen lymph nodes and reported he could not find any.

A piece of information I’d promised in my last update from my July consultation was my MRD status. The Dr checked the research records and confirmed that from that set of bloods I was still MRD negative (yay).

Bloods thus time showed ALC at 1.1 (been hovering between 0.8 and 1.1 since I+V) so I’m happy with that. PLT has climbed up to 185, it had been 149 in July and in 150s since I+V so again happy.

Next cd appointment is in Jan with the research dept, I’m hoping they’ll do another MRD test then.

Feel free to ask any questions. All my updates have roughly the same subject so should be easy to find if you want to look further back.

best to you all, rob

[Yvbb]

Very good results, Rob. Happy to read that the combination therapy is succesful and you feel fine, I suppose?

Best to you.

Yvonne

[Oleboyredw-uk in reply to Yvbb]

Hi Yvonnne, Thank you for the comment, and the question. A clear omission from my post!

Yes, I feel fine. I do have a few aches and pains, but don't we all. None of those could be associated with CLL.

best, rob

[PaulaS Volunteer]

Great news Rob. Thanks for sharing!

Paula

[Peggy4]

Great news. So pleased for you.

Peggy 😀

[terryI_uk]

Glad you're still MRD- Rob, hope that continues long into the future, God bless, Terry

[Superdad3]

Rob,

Greatly appreciate all the posts of your journey, sharing your experiences which provide so much needed insight for the community. I can’t express how much these posts have helped me and I am sure many others. I will speak for myself, from my original diagnosis which I found myself in these uncharted waters and essentially lost, this forum has provided me the knowledge and confidence to not let this diagnosis swallow me up. I just went for my 4 month check up and good news I’m still in a w&w. Had another great discussion with my cll specialist which is so important to have a good doctor that takes the time and explains everything, he sits down and doesn’t leave until I have exhausted all my questions. We talked about if I needed treatments what he would recommend and he indicated currently I & V would be what and why. Reading your posts has been very helpful. Wishing you the best And thank you again for sharing your journey.

[Canuck901]

Wow excellent news , so what dosage of ibrutinib and Venetoclax where you on and what’s your age ? How we’re the side effects ? So now you are off both drugs ?

[Oleboyredw-uk in reply to Canuck901]

Well, in summary -

I am on a Clinical trial for relapsed/refractory CLLers. The trial was designed to evaluate effectiveness for people such as me. It was designed to last 26 months.

I started Ibrutinib in Feb 2017 on 420mg. In April 2017 Venetoclax was added. The Venetoclax dose was 400mg, although a ramp-up of five weeks is needed at the start to reduce the risk of TLS. Ramp-up was 20mg, 40mg, 109mg, 200mg then 400mg.

I did not really suffer any significant side effects. Had upset stomach a couple of times and a bit of brittleness of fingernails(probably Ibrutinib side effect).

Both drugs were stopped on 9th June 2018 as I had achieved the target end result of the trial. I am bc still on the trial and have all the related monitoring but no drugs.

I’m not too sure age is relevant, but 63 currently. If you click on my Id you’ll be able to see my profile and more detail of treatment history, diagnosis etc.

best, rob

[Barbshow]

So glad you continue to have great health, Rob! I just posted for my husband some questions about post-treatment experience. Wondering about monitoring and impact on other meds. Thanks for sharing your experiences and especially for your good news!

[country76]

Congratulations!!Thank you for doing the trial.

[Wroxham]

Good news Rob.

Many thanks.

Sue

[Fight-1964]

Congrats. This is very encouraging results