CLL, Ibrutinib and kidney filtration

[Mos1]

I have had CLL for over 10 years. Five months ago, my Whites counts reached 279, my platelets 80, and Reds about 2.70. My oncologist decided to put me on Ibrutinib at that time. My numbers have improved quite a bit ( whites are now at 88, platelets at 142, Reds at 4.11) during the past five months. However, my kidney filtration has been deteriorating. Around five years ago ( before treatment), the Creatinine in my blood went abnormal to around 1.5 and kidney glomerular filtration rate to 55 and then 45 last year. Starting two months ago, the GFR started going down faster. Yesterday, Creatinine was at 2.02, and GFR was only 33. Is Ibrutinib causing this? Will this be reversed if my whites reach normal levels in the next few months? I am getting worried about my kidneys.

[Cammie]

Mos1

I honestly think this question should be posed to your doctors.

There are a number of side effects rearing their heads in real life scenarios with ibrutinib that were not problematic during the trials.

I believe we should all ensure any problems are discussed fully with medics as this will ensure if these are side effects they are logged officially and details are available to ensure future patients are overwatchedjust in case they reoccur .

It could,of course be that this is not a side effect and in that case there is obviously something else causing the problems. So in this case as well you need to discuss fully, if you haven’t already, with medics.

It may be they initially that they dismiss this as not a side effect if it has not been reported before just like many refuse to acknowledge fatigueas a symptom of cll but it is worth registering the situation.

Does the medication pamphlet mention such problems as possible side effects?

[Mos1 in reply to Cammie]

I am being tested. Last week they did a lot of blood tests, 24 hour urine collection and kidney ultrasound. I have not heard from the doctors yet.

Thanks for your reply.

[Cammie]

The following are the known side effects

Common or very common

Arthralgia; atrial fibrillation; blurred vision; bruising; constipation; dehydration; diarrhoea; dizziness; dry mouth; epistaxis; haemorrhage; headache; musculoskeletal pain; peripheral oedema; petechiae; pyrexia; rash; respiratory tract infection; sepsis; sinusitis; skin infection; subdural haematoma; urinary tract infection; ventricular tachyarrhythmia

Uncommon

Hepatitis B reactivation; leukostasis

Frequency not known

Alopecia; bone-marrow suppression; hyperuricaemia; nausea; oral mucositis; thromboembolism; tumour lysis syndrome; vomiting

[Jph02006]

If you lock your post, you may get more folks with personal experience to respond

[Mos1 in reply to Jph02006]

How do you lock a post?

[Jph02006]

Near the bottom of your original post, you have the choice to click a box that limits the post and responses to the CLL community. The default option is to not limit the post and responses which leaves all comments open to search engines etc. Not sure how much privacy locking really provides, but I gather there is some.

You should be able to edit your original post and select the limiting option,