Hi @Julie21 a great big welcome to our forum and posting.
I reckon it is very natural to feel anxious especially after 12 years on watch and wait.
The Blood Cancer UK support line is there for you on 0808 2080 888
I hope others will share their experiences for you.
Please do keep posting how you are getting on and I look forward to hearing more about you.
Really look after and be ever so kind to yourself
Hi Neil! A fellow US’er here. So glad to hear you’ve done well! I came across this forum recently and find it so helpful. I started the Obinutuzimab regimen in November 2024; have 4 monthly treatments left. I did have a pretty adverse reaction the first attempt. They decided to stop the treatment and restarted a month later. The second try was split over two days and worked well. No IV problems since. I’ve only just begun the Venetoclax tablets and am at the 100mg level. How was your experience with the ramping up of these pills? I’m experiencing headaches. Did you experience any side effects to the Venetoclax? Stay well!
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Hi @Bomdia welcome to our forum, another US’er, you show so well how you have been treated as a unique person, with your own medical history, and treatment plan.
I really believe in keeping my treatment team aware of all my symptoms.
Really look after yourself
Hi, Bomdia,
I started in August and have one Obin infusion left in three weeks. I found out last Monday that I will have to be in the 24 month treatment group, but my attitude is whatever it takes is fine with me. So I will continue on Venetoclax, Zanubrutinib, and Acyclovir. The 400 mg level of Venetoclax really stirred up bowel issues. It’s apparently a common symptom. My doctor switched me from taking the dose with breakfast to taking it with supper. It helped significantly. Hope that helps. Take care!
Nell
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Hi, Julie,
You’re thinking of tumor lysis syndrome (TLS). Staying hydrated is very important. From my start in August until December I had an extra day of IV hydration. I couldn’t leave until after my labs came back with normal levels of kidney function. Everything has been fine since. They don’t even do followup labs anymore. Best of luck to you.
Nell
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Hi Neil
Thanks for the update. I tend to agree with you that a 24 mo versus 12 mo course is a small price if that’s what your dr feels is necessary to teach remission. I have 4 more obinotuzimab sessions and I have begun the Venetoclax pills, no Zanubrutinib. I was told to expect the stomach issues, but was wondering if there were other effects. I’ve noticed some headaches.
Here’s to your continued progress! Stay well.
Nadeen
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Hi Nell
Thanks for that, my consultant thinks it will be the best treatment for me, just waiting on the bone marrow results and see the consultant on the 24th, all being well I will get started very soon after the appointment. I am under the Forth valley hospital in Larbert Scotland, really happy with their care. Just want to get on with the treatment now. Thanks. Will keep updating the forum once I get started.
So are you bow just on the Venetoclax now?
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Hi, Julie,
I will be continuing on 160 mg twice a day of Zanubrutinib and 400 mg of Venetoclax. Plus the 400 mg of Acyclovir twice a day. I’m glad you’re happy with your care; I feel lucky to live where I do in New Jersey in the NY Metropolitan area. Wherever we live, no matter who our doctors are, we always have to be our own best advocates.
I’ll keep an eye out for any updates. Reach out to me any time you’d like. Be well!
Nell
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Good luck hope all continues well for you.
Thanks
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I had my quarterly blood tests and catch up with the global trials program folks and my haemotologist Thursday last week and delighted to advise that my bloods remain in normal range and I continue to be in deep remission. I was initially on Venetoclax for two years and Zanubrutinib was introduced after the first year. It is now over 4 and a half years since I started treatment and I will be on Zanubrutinib for the rest of my life.
My haemotologist advised me that the success rate is over
95%. I was originally given six to 12 months to live and my haemotologist tells me that I am good for a further eight to ten years.
Praise the Lord and the dedicated people in the trials program
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Oh @JohnCP really great to hear from you and I think a great big celebration is in order.
Really look after yourself and please do keep posting
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Wow. That’s amazing. I hope you are doing something nice after receiving that news!
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Hi Nadeen,
I’m on Obinutuzumab + Venetoclax treatment for Chronic lymphocytic leukaemia (CLL) with the wonderful Haemotology team at Glos Royal Hospital. At present on Cycle 5 of 12 with just one more Obinu infusion. Re the Venetoclax tablets at 400mg I have spoken to several other patients to compare side effects and they can vary considerably it appears. For me I struggled with muscle and bone pains, restless sleep, brain fog, fatigue and stomach bloating. I also had a lowered neutrophil count from the drug which meant me taking G-CSF injections for a few days. That caused real bone pains! It’s definitely worth reading the official Venetoclax link online to learn the full extent e.g Macmillan or Mayo clinic links. By cycle 4 I was beginning to feel a bit better on Venetoclax 400mg so side effects can lessen and any helpful consultant will provide help if they can.
One important trick I learned with the Obinutuzumab infusions was to ask for a Loratadine anti-histamine tablet in the pre-meds rather than the standard Piriton infusion. Piriton knocked me out for the day whereas the Loratadine kept me nicely awake. However, we all have different reactions to these drugs but may be this might work for others too!
I feel very positive about the new immunotherapies as they can give such long remissions now with second and third line treatments to back that up. Best of luck!
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Hi Chris!
Thank you so much for sharing this info and your experiences with me. My doctor has continued to recommend that I only take one 100 mg tablet per day. I have weekly blood draws. At this time, she’s mainly concerned with my low plasma levels. She’s said that she will allow me to increase the daily dosage in increments after my plasma levels have increased sufficiently. I started at 25, and have increased to 57 and 67 this week. I have completed my 6 rounds of the Obinutuzumab. Like you, I’m grateful that remission is even possible, and let’s look forward to hearing her say that with word in six short months!!
Please take care of yourself. Thank you again for reaching out to me. I truly appreciate your kindness!
Nadeen
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Thanks Nadeen,
And thanks for sharing this. So encouraging to hear that your plasma levels are obviously responding well to treatment. You’re over the hardest hurdles and halfway through the course with no more long Obinutuzumab infusions!
I believe they call the last 6 months of the ‘O-Ven’ treatment the maintenance phase.
Fingers crossed you have a smooth journey to remission!
Kind regards,
Chris
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Hi, all,
I have wonderful news I’d like to share. On May 20 I had a bone marrow biopsy. The first tissue test came back two days later-out of 400,000+ cells there was no evidence of B-cell leukemia or lymphoma. A day after that the bone marrow biopsy result was normal. It’s just wonderful! This coming Tuesday, July 9 I have my followup CT scan of the pelvis, head, and neck. As I mentioned before, I will continue on with the Venetoclax, Zanubrutinib, and Acyclovir for a full 24 months which will bring me to August 2026.
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