Much much better Nicola thanks. Feel good and reassured it went well with no reactions
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Hi Karlo86.
Hope you’re well.
Is that you finished your treatment? If so, how you feeling and have you had any scans biopsies etc?
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Hi from Australian, I am now 75 years old an I was diagnosed with Chronic Lymphystic Lukumia with a particular mutation called P17 Deletion which doesn’t respond to Chemotherapy about 3 and a half years ago. I was originally given 6 months to two years to live.
As part of a global trials program, I was put on to Venetoclax initially for about two months and this was then supplemented with zanubrutinib.
The ramp up period with Venetoclax steadily increases the dosage up to the recommended level. It is important that you preserve with Venetoclax during this time as your system adjusts to this drug and drink lots of water💧. I was advised that the water causes the dead lymphocytes to be flushed out through your kidneys. After two months Zanubrutinib was introduced. Under the global trials program this was the first time these two drugs were used in combination.
In the early stages I had blood tests every week for the first four months and I would plot on MS Excel the results. In particular the lymphocytes. At first the lymphocytes went sky high from about 10 to over ninety as the lymphocytes were expressed from my glands. Amazingly Venetoclax only attacked and killed the bad lymphocytes and the good ones survived.
I also had bone marrow biopsies about every six months.
After two years I was taken off Venetoclax and I remain on Zanubrutinib for the rest of my life
My last two bone marrow biopsy have confirmed that I am in deep remission and my haemotologist tells me that I am good for eight to ten years.
One of the side effects is that the medication 
is that it destroys the immune system and as a result I have had to have all my childhood vaccinations again and Shringrix to prevent shingles. I have also had every available vaccination for Covid-19.
So far I have not had any infections.
My next visit to the trials program which will include a full set of blood tests and my haemotologist is in about two weeks time and I am hopeful of a good report
Some things to note however is that as a result of the medication, I am susceptible to other forms of cancer and in particular skin cancer and I regularly have a full body scan to check for skin cancers.
As a result of the regular skin checks, thus far, I have had a number of these frozen off before they became a problem.
As a matter of interest, Venetoclax was a 30 year development by the Walter and Eliza Hall Institute here in Melbourne and is now manufactured in the USA
I am forever thankful that I was able to participate in the Global Trials Program which was at no cost to me. If I had to fund this myself, it would have cost me $AUD 300,000 per year
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Hi @JohnCP thanks for the great update,
I have Chronic lymphocytic leukaemia (CLL), but I have been a very lucky girl and always been on watch and wait (active monitoring) for 20 yrs. I am a mere youngster of 74 Yrs old.
I had skin cancer on the top of my head in 2016 with a skin graft from my leg. I look like a mixture of Friar Tuck and Worsel Gummidge (if you know who they are).
Although the top of my head is always covered before and since then (yes, with our weather in the UK.) It returned in 2020 and I had loads of treatments yes, the GP has the freeing gun pointed at me every time I walk into the surgery.
Since then I have had several areas on my face treated with creams and freezing for pre cancerous cells.
We are very complex beings and it is difficult to work out cause and effects sometimes.
I have been told that many blood cancer patients are more susceptible to skin cancers, and we should always be wearing high factor sun creams and cover up.
I am definitely not a medical person and take lots of special care of yourself and please do keep posting
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I had my three monthly blood tests last week and all my bloods are within normal range. My haemotologist also did a physical exam of my glands and they are all still normal size.
My next blood tests are in three months time andnd in i will have CT Scans with a dye in my system half an hour beforehand as well as the dye intravenously into my arm.
This will hopefully confirm all is well with my glands
I continue to stay on Zanubrutinib and will do so for the rest of my life.
So all looking good for now
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Hi @JohnCP that is good news, and it seems as if you have a plan going forward.
Really look after yourself and perhaps relax a little.
Please do keep posting
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Thats really good to hear and it sounds like they are keeping a good check on you 
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Because I am very susceptible to skin cancers as a result of my medication , i have been having three monthly full body scans. A number of melanomas have been frozen off with liquid nitrogen. One remained and after a number of attempts, my GP decided to take a biopsy yesterday and send it off for an Pathology analysis just in case.
I will be back at my GP next Tuesday to get the
results
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Yes, @JohnCP please do let us know the results of the biopsy.
My 50 yr old son went to an outdoor event last Saturday, the weather was slightly sunny, windy and grey and quite cold and he and his friends burnt their heads and faces really, really badly.
A lesson for me.
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I have just had my three monthly bloods and CT Scan an i can confirm that I an still in deep remission
I am now primarily on zanubrutinib and expect to stay on it for the rest of my life
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Wow, that’s good news @JohnCP I think a celebration is in order.
Look after yourself.
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That’s great news! @JohnCP!
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I was so fortunate to be given the opportunity to participate in the Global Trials Program which was fully funded by tht Global Trials Program. To have funded this myself would have cost me over $300,000 per year.
All I can say is Praise the Lord
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Just a wee update. That’s me finished immunotherapy treatment. Combined obintuzumab and venetoclax over 12 months. Blood count back to within range and scan shows lymph nodes have reduced back to normal.
Overall feeling great and can’t thank the NHS enough for looking after me so well.
Good luck to everyone and try remain positive.
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Hi @Gary0 absolutely great to hear from you again.
What a year, I am so pleased that overall you are feeling great and it is heartwarming to hear your gratitude to the NHS.
Thanks so much for posting your experiences and please do keep posting.
Look after yourself
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Hi @Gary0 its so good to get an update and to hear things are going so well for you. Please keep letting us know how you are doing
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Hello from the U.S. It sounds like John from Australia is in a somewhat similar treatment to mine. I was extremely lucky (in a perverse way) to have qualified for a very successful clinical trial at Memorial Sloan Kettering in NY and New Jersey, where I am. It began in 2018 and was the only one using all 3 drugs together. It is now in Phase 2. I started Zanubrutinib 160 mg twice a day plus infusions of Obinutuzumab in August 2024. After 3 infusions the enlarged lymph nodes in my neck and my armpits were gone. In October I began a ramp up of Venetoclax. I also have been on Acyclovir twice a day since the beginning. My last CT scans, before starting Venetoclax, showed that my spleen had returned to normal and all nodes had shrunk. No more night sweats or fatigue. My last infusion will be in March. I don’t know if I will be in the 10 month study group or the 24 month as 1 out of 3 “clones” still shows Chronic lymphocytic leukaemia (CLL) is slightly detectable but my lab work is 100% normal. If it’s the 24 month group I would remain on Zanubrutinib and 400 mg of Venetoclax for that period of time. I pray for everyone’s sake that this becomes the treatment of choice. Btw, I had bowel issues when I started the Venetoclax and my doctor switched me to taking it with supper instead of breakfast. It definitely made a difference. Best of luck to all!
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Oh @Nell a great big welcome and I usually say to people from overseas that this is a UK forum and this might mean we have access to differing treatments and treatment regimes and you have already found @JohnCP from Australia on a fairly similar trial to yourself, that is what our forum is all about.
Please do keep posting as I look forward to hearing more about you and how you are getting on, really look after yourself
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That is so encouraging to hear. And so good for you.
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Hi, glad to hear your result after your treatment.
I have been on watch & wait for 12 years, but have just been told I now need to start treatment with V&O, due to my platelet levels dropping significantly and my spleen is very enlarged. I am just a bit anxious about the risk at the beginning with the first infusion. Can’t remember what they called it but is it ILS? Something that can cause kidney problems? they did say i will have to stay on hospital for the first couple of days. How were you in the first cycle?
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