Hi, I have acute lymphoblastic leukaemia, diagnosed in April. I have been offered a possible place on a trial at Addenbrookes hospital. I wondered if anyone knows about this trial, been offered it or been on it? Any info would be great.
Thanks
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Hi @Summertime. I really hope that someone can help you.
Perhaps now is the time to write down all your fears, thoughts, feelings, medical questions and symptoms and practicalities to ask.
You might like to contact Blood Cancer UK’s Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk, just in case that they can assist. Good luck.
Hi @Summertime. I hope somebody can help. Is it something your considering?
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Yes I think I will go for it. They use this protocol for under 40s and the results are good so I feel it may be an advantage for me to have chemo plus radiation.
I was hoping somebody may have already been on this trial.
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It sounds like you have done your research and it sounds like a promising treatment plan from what you’ve described. When does it start?
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Good luck with the trial @Summertime. You sound like you’re on top of this.
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I know this thread isnt a new one but my OH has been offered and accepted the radiotherapy and chemo trial for his stem cell treatment in the new few months by Oxford. We dont have a date yet.
Was wondering if anyone is able to feedback any of their experiences on this trial please. He is 63 and diagnosed with ALL Ph + in December 2021.
Thank you
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Always good for others to share their experiences. Hope somebody can help X
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Hi @Debbie36,
Thank you for sharing this with us all i’m sure many will be able to help and share experiences with you. I do hope your other half is doing okay?
It is possible you are yet to be informed but often when entering a trial you will be given a contact for the trials nurse specialist or localised team.
If your partner has not been given this yet it may be worthwhile raising this with his consultant as the trials team would be able to offer more support and shared experiences with you both.
It may be useful to know that we do have a specific clinical trials team here at BCUK who would be certainly able to help talk through trial phases and any general queries you have- Clinical trials | Blood Cancer UK.
You can also contact our Clinical Trials Support Service here- Blood Cancer UK clinical trial referral | Blood Cancer UK.
Do Take care, Lauran
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Thanks Lauren. He does have a contact and will be having an appointment to discuss futher.
He has also been given quite a bit of info.
Its good to have the extra support here.
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Please let us know how you get on @Debbie36 and look after yourselves
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I live in Australia and I have Chronic lymphocytic leukaemia (CLL) with P17 deletion which doesn’t respond at all favourably to Chemotherapy. I was diagnosed just over two years ago and I am under one of the absolute best haemotologist in Australia who practices at the Peninsula Private Consulting Group.
After an exhaustive set of test I was fortunate to be accepted into cohort 3 of the BGB-3111-304 Global Clinical Trial.
There are 500 in the program of which 50 are in Asia Pacific which we are part of.
The two primary drugs that I am on are Zanubrutinib and Venetoclax as well as some secondary drugs to combat the side effects of the two main drugs.
Initially my lymphocytes shot up from 6 or 7 to over 80 as the Chronic lymphocytic leukaemia (CLL) was released into the bood stream and flushed out through my kidneys.
My glands went from about an inch and a half to the size of a pea.
At my last bone marrow biopsy there was no evidence of the P17 deletion and only tiny fragments of Chronic lymphocytic leukaemia (CLL).
Furthermore, about 2 months ago, a CT scan with a dye in it confirmed my glands have stabilised at the size of a pea.
The only side effect that I have is that I can get fatigued at short notice. I have found the a short rest followed active exercise reduces the fatigue considerably.
If the opportunity is there, I would recommend that you jump on the chance to be part of these Global Trials
Cheers and have a merry Christmas
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Dear @JohnCP
Thank you for your post and it is so good to hear that you have gained a response from the trial treatment. Here is some information from our colleagues at Lymphoma Action regarding the trial for anyone else on the forum:
Lymphoma Action | BGB-3111-304: a randomised phase 3 trial comparing zanubrutinib with a standard treatment for people with untreated chronic lymphocytic leukaemia (CLL) or small lymphocytic lymphoma (SLL) (lymphoma-action.org.uk)
Best wishes and take care
Gemma
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Hi Gemma, interesting that your post makes no mention of Venetoclax which I am on in combination with Zanubrutinib.
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Hi @JohnCP I will copy your post to @GemmaBloodCancerUK for you.
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Hi @JohnCP
You are quite right, not sure why that is? It does mention Venetoclax in the Trial Information in the link at the bottom of the page: A Study Comparing Zanubrutinib With Bendamustine Plus Rituximab in Participants With Previously Untreated CLL or SLL - Full Text View - ClinicalTrials.gov - Experimental: Cohort 3, Arm D: Venetoclax + zanubrutinib.
Hope this helps,
Gemma
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Yes I agree. The key takeaway point is after being on the global trials program and being on venetoclax and zanubrutinib for two years I am now in deep remission with no sign of p17 deletion in my last bone marrow biopsy
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That is fantastic news @JohnCP, thank you for sharing this with us and take care.
Gemma
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