Update and the end of Ibrutinib

[guyhighlander]

Taking Ibrutinib since 2015 and ends 12/22 after tough end of the year 2022

chronically what was happened :

start with strong a strong flu in mid November,couldn't do anything,been only in bed

2 weeks added stomach problems , had to go in hospital and diagnosed with stomach ulcer

doctor stopped taking my Ibrutinib, large lymph-nodes developed on my neck and groin

treated ulcer with medication 10 days and big Lymph-nodes start to vanished

in between blood-tests went bad , leukocytes , thrombocytes and other went down the normal

back home from hospital I felt problems with my heart , luckily became appointment 2 days before New Years Eve, had a long-term-ECG and doctor send me straightaway to hospital again with over 150-200 puls

over I had a shock therapy to start my heart again and ablation

doctors in both hospitals and new oncologist sad that problems coursed by Ibritinib , which I don't agree.

Unfortunately have looking for a new oncologist , while study ends last October

my conditions became more bad, lost 16 kg and blood tests where dangerous .

after had my bone marrow biopsy doctor told me on my birthday i had richter-transformation,

no idea what was happened ,after being home looking for more info's in web, the best was some articles here in forum and gave me hope "I don't have it" , my symptoms no lymph nodes and leukocytes count under normal

next week had my CT-pet and week after this, doctor sent my biopsy to specialist to Uni-hospital Würzburg and they where saying its still CLL ,which I was very happy after news.

Now starting 6x Rituximab every 4 weeks and straight away with venetoclax , dosage

20mg 1.week

50 mg 2.week -was starting yesterday

until 200mg

Unfortunately today

Leukocytes 1,1 Gpt/l

Thrombocytes 74 Gpt/l

Haemoglobin 5,1 mmol/l

Neutr.Granul. 0,53 Gpt/l all well under normal

so became 2 dosage blood and doctor will see if we have to stop venetoclax for awhile to bring blood-count up

I am not sure with all this , oncologist in ambulance-hospital doesn't spend enough time to talk with patient and I got the feeling to go back to Ibrutinib ,maybe I am wrong .

will send all details to my new oncologist (own praxis) , and maybe can having appointment to discuss everything.

So will see whats happens next week ,will let you know .........like every-time, sorry for my english

Wolf

[CycleWonder]

If I understand correctly, you don’t have Richters. Ibrutinib can cause heart problems. Perhaps an alternative drug that would be easier on your stomach and heart? There are other BTKs and also Pitrobrutinib (a non covalent BTK), as well as V&O.

[DawnRedwood]

So sorry to hear of all the problems you're having. I hope the doctors find a solution for you. Do your specialists consult with each other?? I hope they do. Let us know how you're doing!!!!

[guyhighlander]

Hi everyone.just a little update after more than 1 year taking Venetoclax.

had some issues with stomach and heart problems , changing diet and life inclusive doing little bit sport. everything became good.Just from nowhere my blood-count drops , thrombocytes down to 15 , hemoglobin 7,8 and haematocrit 0,35 ( all 3 out of range), had a blood transfusion today . Tomorrow get bone marrow test .

Looks like Cll coming back or mutated or maybe Venetoclax pushed it down.Is there any experience like this with Venetoclax therapy.

What option I have after I have to stop venetoclax.

sorry for my basic English,Living back in Germany.

Thanks for help

[AussieNeil Partner Administrator in reply to guyhighlander]

How close are you to Köln? That's where the world renowned German CLL Study group is based and where you'd have good access to clinical trials.

Neil

[guyhighlander]

Hi Neil, Yes I know, will see if I can contacting UNI - Köln, when I get my results. But will be interesting to get to know if someone got similar symptoms. Thanks Wolf