CLL treatment

Going through treatment
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Hi. The treatment for my Chronic lymphocytic leukaemia (CLL) started on 2nd of January 2025 at the Edinburgh Haematology Centre. The centre was opened around 2 years ago and is a fantastic facility, with art work and calming colour scheme, and it doesn’t feel clinical in any way. The treatment started once blood test results came back and I then was given pre-med of steroids and piriton by infusion through a cannula in my hand. This took around one hour.

The treatment on day one is a low dose of 100mg, given in 4 x 25mg infusions of obinutuzumab, each one lasting an hour. After each infusion, BP, pulse and temperature are checked before the next infusion starts.

The first two infusions were fine, but shortly after starting the 3rd infusion, I had a reaction - dizzy, nauseous, blurred vision and feeling faint. On pressing my alarm button, 4 nurses and a Dr attended. My BP had plummeted, so the treatment was paused and I was given fluids, lying flat with my legs held higher than my head.

I recovered after around 30 mins, was checked over again by the Dr, and the treatment was restarted, without any further incident. It seems that this is a common reaction.

I returned to the centre the following day to be given 900mg of obinutuzmab over 8 x 30mins infusions, starting on a low dose, which is increased every 30 mins, after observation are taken. Thankfully, all was fine.

All of the staff are great and the centre is a wonderful place. I was very tired when I got home and had the best sleep in weeks, probably a mixture of relief and the effect of the treatment.

I’m back in next Thursday and the following Thursday for the next lot of infusions, this time at full strength 1000mg. Then, the week after, I will be in on Thursday and Friday to start the venetoclax tablets, which might require an overnight stay.

So, cycle 1 of 6 is underway, which will take me through to the middle of May. Happy chappy, Jim

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Hi @JimR thanks for telling us so clearly how your treatment plan is going.
Really look after yourself and keep letting us know how you are getting on.
Be very kind to yourself

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Hi Jim

Interesting to hear as I have just been told that is the treatment that I will be receiving.

Hope the rest of your cycles go well

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Hi @Anne60

My treatment finished on 3rd Dec 2025. I had a ct-scan yesterday and will see my consultant on 5th Jan 2026, so hopefully the treatment will have been succussful and I’ll have a reasonable period of remission before anymore treatment is required.

I hope that your treatment goes well. I’ts a long road but hopefully worth it.

Jim

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Hi Anne

You will be in hospital for the start of your treatment between 4 to 7 days it can vary , they start you off at a small dose venetoclax 25 mg , they will watch and monitor you for something called TLS Tumor Lysis syndrome it when the cancer cells are destroyed very quickly and your kidney have to get rid of them . So you will be given medication to stop this , I never had any issues and many people I know haven’t had any issues with TLS it is rare honestly

My experience it’s not a difficult stay physically in hospital ,I was very well throughout often went for walks ( I was not neutropenic) I suppose I struggled more with actually being kept in hospital, even though I work in the NHS it’s different when your a patient

But honestly you will be fine most people have no issues with venetoclax or with the stay in hospital

Stewie

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Hi Anne

Mine was different to Jim’s experience, I received Rutuximab and these infusions were given after I left the hospital and after they had increased the dosage venetoclax each week .

Stewie

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Hope your treatment is still going to plan.

I started mine on 12 February at Western General Hospital, unfortunately I had a really bad reaction to the first infusion after only 30mins.

I went back the next day more apprehensive than before but the staff are brilliant and I managed to get the rest of what I should have got the day before.

Got 2 more infusions the following 2 weeks (first dose over 3 weeks)

The following week (day21) I got 20mg of Venetoclax, I had to wait approx 6 hours after taking tablet before getting my blood taken and if all okay I got home to go back the next morning to get blood taken again and if that’s okay you get the rest of that weeks tablets. I was back on Tuesday day 1 of cycle 2 unfortunately my white blood cell count was too low to get Obinutuzumab infusion however the Venetoclax was increased to 50mg. Hoping next week my blood count will be up to get infusion and tablet ramp up to 100mg.

So far I have been in feeling generally okay apart from the last 2 weeks I have felt my joints really sore and a bit hot 3 days after the first tablet and 3 days after ramp up to 50mg but the flowing day I am okay Maybe just coincidence!!

Still a long road to go and no doubt I will have some set backs to overcome but quite pleased how things are going at the moment.

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Hi @Anne60

I’m glad that your treatment has started. My treatment finished in December and it was a challenging 11 months getting to that point. The staff at WGH Edinburgh are amazing and the facilities are excellent. No doubt you’ll have a few up’s and down’s during your 11 months of treatment, but it’s worth it when you’re told at the end of it all that it has been successful.

I’m back on active monitoring, so blood tests every 3 months and I see my consultant next in September.

Hopefully you’re treatment will also be a success.

Best wishes.

Jim

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