Hi @Lynne57 I have been thinking of you.
How is your Covid?
Are you back on treatment now?
How is your fatigue?
Be kind to yourself, it takes so long to build yourself up.
Hi Erica,
Thanks for reaching out. Just about recovered from covid. I’d completed 10/12 venetoclax cycles and after consulting with my consultant he decided to end my treatment as it had done its job. This decision was due to how ill I had been feeling on the treatment over the last three months. I have now been finished for nearly four weeks and really not feeling much better. I have been troubled by diarrhoea for sometime which isn’t abating so now under investigation. I know it will take time to recover but it’s not coming quick enough for me! Lynne. (Happy Christmas)
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I know what it’s like when you just want everything to get better a lot quicker than it is! Small steps eh. Hoping you start to feel a little better sooner rather than later X
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I am sorry that you are not feeling much better, @Lynne57 unfortunately in my experience it takes a long time to build back up. You and your body have been through a lot during treatment, but it is so frustrating.
Slow and steady wins the race and all that.
Look after and be very kind to yourself.
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Hi Erica, following on from my last update it appeared I had a stomach bug which needed antibiotics to clear. So I’ve gone from constant diarrhoea to constipation! I’m hoping to start feeling better soon. If not it will be back to the GP for more investigations. Happy new year! Thank you for reaching out.
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Oh, no, @Lynne57 that going from constant diarrhoea to constipation, both are yukky in their own way.
Really look after yourself and what a way to start the new year.
Hi. I’m due to start V & O combo next week
How did you get on with your treatment? I’ve been 8 years on w&w. Can you advise how long the side effects last for and is there any hair loss. Thanks Gary
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Hi @Gary0 I just wanted to say I hope that your treatment goes OK and it really is the unknowns that are scary.
Others may be able to share their experiences but please do ask your questions, fears and practicalities to your medical team next week, they know you best.
Please do let us know how you get on, I will be thinking of you, be very kind to yourself
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Hi Space Angel, I was diagnosed with Cronic Lymphystic Lukumia with P17 Deletion almost 3 years ago. By late December 2020 my Chronic lymphocytic leukaemia (CLL) had got quite serious and I was fortunate to be under one the best haemotologist in Australia. A full set of blood test, bone marrow biopsies and CT Scans with dye were done and it was confirmed Chronic lymphocytic leukaemia (CLL) with P17 Deletion. I was invited to take part in a Global Trials Program of 500 participants. To cut a long story short, I was started on the ramp up program of Venetoclax and after two months Zanubrutinib was introduced. I came off the Venetoclax after 26 cycles but remain on Zanubrutinib. My last two quarterly bloods and bone marrow biopsy have confirmed that I am in deep remission
I will remain on zanubrutinib for the rest of my life
My lymphocytes are back to normal and my glands which were the size of golf balls arr now the size of sultanas.
My haemotologist says that zanubrutinib in particular is a game changer in the treatment of Chronic lymphocytic leukaemia (CLL).
As a result of the 95% success of the Global Trials Program both Vanataclax and Zanubrutinib are now heavily subsidised on the health system in Australian
I was very fortunate to be part of the Global Trials Program where all my costs were covered be the Global Trials Program. To have funded this myself would have cost $300,000 per year.
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Very interesting @JohnCP yes, you were lucky to get on the trial of 500 participants.
It is also useful to hear of your experiences in Australia.
Did you have any side effects?
Look after yourself and please do keep posting
I have had minimal sid effects. I have a high vegetable and fruit diet, two litres of water a day an also a glass or two of shiraz a day for the antioxidants
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Hi Erica, some further good news, I had a bone marrow biopsy in early November last year along with a full battery of blood tests. My bone marrow biopsy was free of Chronic lymphocytic leukaemia (CLL) and importantly there was no sign of P17 Deletion.
I have now been in deep remission for six months and my haemotologist tells me I am regularly talked about in global review sessions.
I have been taken off Venetoclax about six months ago but will remain on zanubrutinib for as long as I continue to benefit from it.
Cheers and have a great year ahead
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Also importantly for anyone on Zanubrutinib is to be very aware of skin cancers as this is well documented as one of the side effects.
My haemotologist recommended that I have a full body scan every three months. As a result, I have had a number of skin cancers frozen off on my back
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That’s really good news @JohnCP.
It sounds like you have a great team who are taking really good care of you 
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I am just starting this treatment and still curious…i had some reactions last week and attempting “day 1” again today. If you want to follow me on instagram i have just started an account…ive found it hard finding info and talkingbto people in the same boat. This forum has been quite good to be honest.
Its called whatthe.Chronic lymphocytic leukaemia (CLL) if you search for it.
Im a bit hesitant about the long term effects of the trearmebt more than anything, im 37 so hoping i can continue a good life for as long as possible.
For now im concentrating on getting through the chemo and making a good recovery.
How have you found it?
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Hows it going gary? I started last week and some reactions…back in today
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Hi Karlo
Thanks for your message. Hope you’re well.
My treatment is going good so far. Had a small reaction at the start of the obinutuzumab but now onto monthly infusions and the 400mg daily venetoclax.
No real side effects and even managed a 5k run at the weekend!!!
Have a meeting with my consultant in 2 weeks so hopefully he confirms progress is being made. I feel so much better and all my lumps have disappeared which is brilliant.
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Thats good to hear Gary, have you seen a difference in your blood results already? I probably have a similar programme…i have 6 months including month IV of Obinutuzumab and Venetoclax then remaining 6 months on Ventoclax only…28 day cycles. All being well im hoping to get it finished at the end of this year.
Good to hear from you. Ive just started a instagram account called whatthe.Chronic lymphocytic leukaemia (CLL) as i havent seen or found much about. If you want to keep updated fee free to follow.
Thanks for replying, im actually just at oncology unit now 
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How did the treatment go today?
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