Next stage of the journey Ib to Vclax

[Lawand1]

After eight wonderful years on Ibrutinib with all most no side affects, it at last seems the efficacy is waining as my lymphocytes numbers jumped from 4 to 27, and Vclax will be my next drug of choice. I loved the mundanity of Ib, I forgot sometimes I had Cll! However over the last two yrs there have been some signs that I was creaking! Therefore the news of a need for change was a little shocking but somehow reassuring too, almost a relief. My haematologist, Dr Toby Eyre at Oxford, has headed up an arm of the pirtobrutinib trials and was frankly buzzing about its potential, confident it will be readily available within two years. So, I’ve got a few years, hopefully, with Vclax, and then a few more with Pirtobrutinib and then a few more with who knows what?! I could of course get hit by a bus in the meantime 😂😂😂. So, why share this story? Only to give encouragement that although we’re all unique, there are solutions and drugs available that were non existent when I was first diagnosed as a 42 yr old man in 2008. I thank God and the scientists and doctors that work for our well being. Take encouragement, and have a great day.

[annmcgowan]

Here, here, thank god for our scientists and doctors. Good luck with your next treatment.Ann

[Poodle2]

I like your attitude, CLL somehow makes us realise our mortality more but you are right about the "being hit by a bus" kind of thing. All the best with your new treatment. Petra ❤

[Lawand1 in reply to Poodle2]

Thank you. Yes, the mortality aspect is unique to us (and those like us), so more than ever this life has to be a good one, not wallowing in fear but being sensible with a passion for doing the right thing for ourselves and others, building a legacy.

[Fran57]

Great post… thank you and good luck for the next treatment. I hope your great results from it last as long, if not longer!Stay safe

Fran 😷

[RogerPinner]

Hello Drew, we chatted last year when Ibrutinib failed for me. I thought about Oxford, Toby Eyre and what was then called the Loxo 305 (pirtobrutinib) trial, but decided to stay at UCLH and switch to Vclax. Not entirely without events during the ramp-up, but the team at UCLH are now happy for me to remain on a low dose (100mg a day), which is working fine, confirmed by feeling good, blood tests, and CT scans showing shrinking nodes throughout. Hopefully it will be just as good for you.

Very promising info from Dr Eyre that Pirtobrutinib looks so promising and could be available (if needed) in a couple of years. Just have to hope the govt won't do another Evusheld on us!

Finally the most apposite quote on the situation you described, although I believe it is attributed to someone in far worse circumstances than we find ourselves, "Everyone has two lives. The second one begins when you realise you only have one". Steven Sotloff (1983-2014), American/Israeli journalist decapitated by IS militants in Syria or Iraq.

Best wishes, Roger

[Lawand1 in reply to RogerPinner]

Hi Roger, it’s always a pleasure hearing from you, I value your thoughts and opinions very much. Thank you for your kind wishes, I’m glad you went on to Vclax not least as I’m assured from Dr Eyre that Pirtobrutinib works well on those who’ve been on Ibrutinib and Vclax in the past. No guarantees as ever but very encouraging!

How long have you been on Vclax so far Roger given you seem to be doing well?

As for the quote, it really moved me as he was absolutely right, poor fella found it out a particularly hard way 😔

[RogerPinner in reply to Lawand1]

Drew, I started Vclax on 18th August last year, so I'm taking this opportunity to wish myself 'Happy Anniversary Today'!I had one Rituximab infusion and then agreed with the UCLH team to discontinue, Partly because of the need for hospital visits during Covid which I wanted to avoid, and that R prevents covid vaccine efficacy, but also because whilst V+R is the protocol, there is no evidence that it's any more effective than V alone.“ See an article printed in the peer-reviewed American journal ‘Clinical Advances in Hematology & Oncology’, April 2021, written by the eminent CLL specialist Richard Furman.... document titled ‘Venetoclax. Should it be used with or without Anti-CD20 therapy’.

Also agreed a slow ramp up because all my numbers and swellings reacted well to 50mg of Vclax a day, and my neutrophils and platelets tanked each time the dosage was raised. I'm now on 100mg a day and as I said in my previous note, it's all looking good after a year. Only time will tell if I'm being silly.

I will be interested to hear how you get on.

Roger

[Lawand1 in reply to RogerPinner]

Thanks for the reply Roger. Dr Eyre said the very same, that mono Vclax is as effective as it gets. Happy anniversary with a year under your belt! Here’s to many more. I’ll keep you posted, although I don’t see Dr E until end October after CT scans, where we’ll agree timing based on counts and nodes. Feeling at peace meantime.

[CLLCalifornia-USA]

Thanks for your encouraging post. I’ve been on Ibrutinib for five and a half years and it has given me a life. In the back of my my mind I worry what happens if it stops working and now I feel confident I have options. I feel so good on Ibrutinib that no one would know I have CLL/SLL unless I tell them. Wishing you the best. Sally

[Lawand1 in reply to CLLCalifornia-USA]

Sounds familiar Sally, easy to say but harder to do…don’t waste time worrying, the drugs work until they don’t and for you that could be years from now with Ibrutinib! After that there’s options. Best wishes.

[Bluepup60]

Thanks for sharing! I'm in the same boat as you. Six years on Ibrutinib, started Venetoclax/Gazyva in May. Like you I'm hoping for at least a few years on Ven, then hopefully the next best thing.

[Lawand1 in reply to Bluepup60]

Best wishes for the future!

[LeoPa]

Best of luck going forward!