I am very interested in what any others may have with Chronic lymphocytic leukaemia (CLL) with the chromosome with P17 deletion?
I have been on a global trial program for Venetoclax and zanubrutinib for over two yeats and just come off Venetoclax but continuing on with zanubrutinib. Currently no traces with regard to P17 deletion and my Chronic lymphocytic leukaemia (CLL) is in deep remission.
2 Likes
Hi @JohnCP sorry I cannot help, I hope others can.
This might be a daft idea but as it is a global trial programme do you think you might have some luck by asking the trial programme which countries they recruited from.
A good question, look after yourself
Hello @JohnCP, brilliant to hear that the trial delivered such an excellent response. Just wondered how you are and if you had received any contacts from anyone with he same diagnosis from beyond our forum?
2 Likes
Unfortunately I have had no comments or feedback apart from this forum .
Keep up the great work
1 Like
Please don’t hesitate to give us a call on 0808 2080 888 if you’d find it helpful to talk things through. We’d be really happy to support however we can.
1 Like
I met with the clinical trials people Wednesday this week and my haemotologist and my bloods are all back in normal range.
Importantly I am having no side effects from the medication I am on.
1 Like
Hi @JohnCP, thank you for taking the time to share this, and I do hope you’re doing okay? I’m pleased to hear you’re not having any side effects and that your bloods are back within normal range. That’s very reassuring to hear. Take good care.
Best wishes,
Tanya.
1 Like
I am still part of the clinical trials program and I have come off Astravenica after being on it for two years but remain on Zanubrutinib. As mentioned in a previous post I am now in deep remission. All my bloods are back in normal range.
I was this past week as part of the trials program invited to take part in an extention to the trials program for a bone marrow biopsy.
I had one initially before starting on the trials program a second one after 22 months that confirmed that I was completely free of P17 Deletion with only minimal traces of Cronic Lymphystic Lukumia. This was the first true indication that I was in remission. The objective of the 3rd bone marrow biopsy will be to confirm that I am in long-term remission. I was originally given 6 months to two years to live. My Haemotologist is now talking 8 to 10 years and who knows where medical science will be in 8 to 10 years.
I will have the 3rd bone marrow biopsy on Wednesday this coming week.
2 Likes
Hello JohnCP
Thank you for describing your amazing trial experience that has resulted in such a positive outcome for you.
As you so rightly say, new treatments to treat blood cancer are being developed continuously with great optimism for the future.
Would you be happy to share the name of the trial you are on?
Many thanks for your message and good luck for the future
Lynne (Clinical Trial Support Nurse)
3 Likes
I have my bone marrow biopsy result back and these show that I continue to be in deep remission with only the tiniest remnants of Chronic lymphocytic leukaemia (CLL) present and no detection of P17 Deletion in my bone marrow
3 Likes
Oh, @JohnCP that is really good news and I am really pleased for you.
I can feel a good celebration coming on, enjoy.
Yes and thanks for your good wishes.
However, as far as I am aware, I will stay on zanubrutinib for the rest of my life to keep my Chronic lymphocytic leukaemia (CLL) in check.
By the way, how are you doing these days?
Love an kisses
2 Likes
On Monday this week I had my regular CT Scan with dye in it as well as a full range of blood tests,
Also about 4 weeks ago I had a bone marrow biopsy taken.
All good news, the bone marrow showed absolutely minimal Chronic lymphocytic leukaemia (CLL) and no sign of P17 Deletion.
Furthermore, my CT Scan showed all my glands to be about the size of a sultana and my bloods were all within range. Importantly my Lymphocytes were down to 1.1 which is an amazing result. I have now been on the global trial for over 2 and a half years. It is five months since I finished Venetoclax which I was on for two years but continue to be on Zanubrutinib which I will stay on for the rest of my life.
My haemotologist originally gave me six months to two years to live but now she tells me I am goo for at least ten years.
2 Likes
Hi @JohnCP, what wonderful news! It truly is such a fantastic outcome. We so appreciate you sharing your story and wish you the very best in the future.
2 Likes
Clearly the Global Trials Program has been an outstanding success.
2 Likes
Oh @JohnCP that is really good news, I am so pleased for you.
I think you should now enjoy yourself and celebrate
1 Like
Hopefully my results will giehopeand encouragement to others to engage in and preserve with the programs they are in.
1 Like