Advise on CLL Treatment Options - UK

[Ageon]

Hi Everyone

In January 2024 I will be seeing my CLL specialists to discuss the treatment options now available for me in the UK.

This will be my second treatment as I started my initial treatment 4 years ago at the age of 68 years in Nov 2019. This consisted of 5 cycles of Obinutuzumab + chlorambucil which very successfully addressed my CLL and returned all my bloods to normal very quickly. During this 4 year period I haven't experienced any problems at all.

Unfortunately, at my last visit to clinic my bloods showed that the CLL was returning and therefore it was decided that I would need further treatment.

During my period of remission I know there have been some fantastic developments in CLL treatment options and therefore I wonder what the general opinions are about what is the most effective treatment that is available now.

I am aware that co-morbidities may reduce the options for treatment and I do have AF, although it is quite infrequent and has never caused me any problems in the past.

It may be that the CLL specialist will decide on the treatment himself but if I can get some feedback I want to be in a position to ask why not an alternative treatment or at least have some discussion about it.

Any feedback is very welcome.

Thanks

[Skyshark]

Looks like it's 2 years of VenR for you.

clatterbridgecc.nhs.uk/appl...

All the best, Peter.

[RogerPinner]

Ageon, to the right of your screen is a list of Topics, treatments and trials will probably be most relevant to you. Long list of informative posts but you've got till January before your hospital visit.

But I would be very surprised if your consultant will 'decide' for you. I would hope he would discuss your options with you, including the pros and cons specific to your circumstances. If he doesn't I might think of changing my consultant.

Wishing you all the best.

Roger

[Nucleusman]

Have been on Calquence (acalabrutinab) since last November and now in remission and dose reduced to one a day. Can cause af but so far no signs although do get bruising and occasional nose bleeds. Being treated at Hammersmith meant to be best in Europe

[Jennifer_africa in reply to Nucleusman]

Hi there Nucleusman

I would be very interested if you could report on how your count does now you have reduced the calquence to one daily. As my count has been low for a few months now I asked my Dr if I might go to one a day, but he said no. So as I am an ex nurse in my younger days and like being pro-active, I am very interested in how you go.

Thanks Jennifer_africa

[Nucleusman in reply to Jennifer_africa]

haematologist decided levels were normal for several months so decided to reduce dosage. more important he was concerned about the bruising on my body and maybe thought a reduced dosage would help. am still getting bruises but am technically in remission

[Jennifer_africa in reply to Nucleusman]

Thank you please keep me in the loop with further developments. Are you on a blood thinner?

My husband is 82 and healthy he gets bruises all the time just from brushing past things and knocking them.

[Nucleusman in reply to Jennifer_africa]

am on both clopidrogel and aspirin following 2 heart attacks. my bruises come up for no apparent reason. but am still alive and in remission. before drugs like acalabrutinib there was nasty chemo with wicked side effects

[Jennifer_africa]

I was originally diagnosed with mantle cell lymphoma with lymphocytosis non nodal . I was 57. Was on wait and watch lymphocytes going up gradually but my spleen was enlarging. At 62 I had a very large spleen that had to be removed, the white count had gone up but after spleen removal came down to around 30 for lymphocytes that was 2002. I was really eating a healthy low carb no sugar diet. Things went well until 2017 when lymphocytes shot up to 260. At that time I commenced treatment with rituximab infusion and the chlorambucal I think it was 20 mgms for 10 days after each infuion. I had 4 sessions of that. It stabilised the count extremely well. At that time we were selling up to relocate back to England. I introduced myself to the blood clinic at Huddersfield and they did baseline tests said my diagnosis seemed to have changed more towards CL L. I stayed on w&w

until February 2022 when the Lymph’s were 196 and I had To go on treatment my Oncologist said as I was older he would like me to go on Acalabrutinib (Calquence ). I started on that 18 months ago it rapidly brought the count down to around 3 for lymphocytes and although there are worries about problems with the heart in the literature, I also have Afib so I was carefully watching out for any signs of heart being affected. None have occurred.

However in June this year I was feeling most peculiar as though my body was losing its strength. I had seen my oncologist for a blood check that was fine so I didn’t think it was my CL L, I tried to keep going but I was feeling dreadful. I rang GP and said it must be something blood related would he order aFull Blood Count for me. It showed that my Haemoglobin level was down to 80 mine is usually 110.

it was suspected that I had had an abdominal bleed. Gastroscope and colonoscopy were done it showed nothing that would account for a bleed. I mention this because if you are on blood thinners because of being on beta blocker for your heart, it has been found that in older people the capillaries used all through the digestive track can leak blood into the digestive organs. And the blood thinner makes that worse. The G P lowered my dose of Xeralto, to try stop capillary leakage.

I think that is all I can tell you ( you got more than you bargained for)

I was diagnosed at 57 and thought from my diagnosis and that I was told they couldn’t cure my Mantle Cell Lymphoma but only keep treating, I would be dead by 60. But after many tears at the time I am still alive and kicking at 80.

Hope this helps you

[Ageon in reply to Jennifer_africa]

Thank you Jennifer and long may your remission continue. Very inspiring story!