Ibrutinib: Hi folks, I start my Ibrutinib... - CLL Support

CLL Support
13,864 members21,796 posts

Ibrutinib

Daveyo
Daveyo
15 Replies

Hi folks, I start my Ibrutinib treatment (part of the FLAIR trial) tomorrow, I was due to begin last week but had a nasty viral infection. Does anyone else take this and how long have they been off work?

15 Replies
oldestnewest
jimvan

Hi Davey, I'm a 68 year old retired man and I take imbruvica (ibrutinib) and have been taking it for about 6 weeks. I can't answer the question about work, but the drug is working quite well for me (shrinking my lymph nodes dramatically). I started feeling significantly more like my old self after about 4 weeks. Good luck with your treatment.

4 likes
Reply
CLLCalifornia-USA

Hi Dave,

I’ve been on Ibrutinib since January 2017. I started seeing results immediately and have not had any negative side effects. Lymph nodes were huge and just started disappearing within days. I’m retired but very active. Hope you will receive great results also.

Kind regards,

Sally

5 likes
Reply
AmericanRonin

I've been taking Ibrutinib for 20 months. I didn't need to take any time off of work, though I went through lots of the initial standard side effects, like joint pain, which dissipated after a few months. Good luck to you!

3 likes
Reply
Sam-1
Sam-1
in reply to AmericanRonin

Hi colleague: I have taken imbruvica about 6 months but in small dose averages to one a day because of side effects mainly severe muscle spasm ,blood count down from 60k to 21k, same time I been on ivig 40 gym monthly for 6 months but still I get sinusitis and bronchitis in spite using saline sinus rinse, I am 82 y old non smoker. Any body have ivig found it useful. I discuss it with my hematologist. The problem ivig have only what is called igG with only trace of igA , the latter low level is essential to fight the infection, my hematologist say it is not available because of side effects .i have G and A immunoglobulin but normal igM , I don’t know the significance of the latter. I appreciate if any experienced this problem. Cll patients have low immunoglobulins which are produced by normal lymphocytes.

2 likes
Reply
AussieNeil
AussieNeilAdministrator
in reply to Sam-1

Only IgG can be supplemented by infusions, not IgA and IgM (which are in lower quantities normally). IgG can provide somewhat overlapping protection to IgA and IgM.

1 like
Reply
Oleboyredw-uk

Hi Daveyo,

I’m on Ibrutinib as part of the Clarity trial. Cant answer your question directly as I took early retirement a couple of years ago. What I can say is it didn’t impact my daily things I do. Hope it goes well for you.

best, rob

2 likes
Reply
Sam-1

Clarification I have low igG and igA / I wish the latter is been available then take care of side effects.All drugs have side effects.

1 like
Reply
buzzybab

Hi I have been on ibrutinib for 4 weeks now just started with joint pain in arms other than that nothing else still early . I'm on flair trial due to add venetaclax in another 4 weeks. Consultant signed me off work for 6 months due to high risk of infection because of environment I work in but honestly I feel well and wish I was at work. Good luck to you on the start of your journey

3 likes
Reply
Sanphil

Hi I started today on the Flair Trial. First tablets of Ibrutinib then tomorrow my first Rituximab intro ends tomorrow. Feeling a little anxious.

3 likes
Reply
Sanphil

Re the last post that should read starting Rituximab tomorrow into my vein

Sandra

2 likes
Reply
DLD1958

Hi, I am 59 and in my 4th week of Ibrutinib. Hypertension kicked in and had to start blood pressure med. I haven't missed any work.

4 likes
Reply
mja511

Hi - I'm 60 and have been on Ibrutinib (Imbruvica) for 2 years. It took about 4 months before we saw positive results. I haven't had any side effects, and I haven't missed any days of work.

5 likes
Reply
debs24

Hi.

I've been taking Ibrutinib since July 2017 and haven't needed to take any time off work. I've been on holidays, out to meals and concerts, enjoyed birthdays and Christmas with family and friends - in other words, getting on with life as usual.

The medication appears to be working well for me - my WBC are down to the normal range, and most other blood counts are normal too.

Good luck to you - but, hopefully, you won't need it!🙂

Debs.

6 likes
Reply
RJR1

19 months in.... 420 mg per day. Virtually no side effects... other than brittle nails and troublesome splits on skin at fingertips. I keep Liquid Bandage always ready, use Hard as Nails, hydrate hydrate hydrate and keep good non greasy lotion handy.

I'm 67 1/2 and while I get fatigued I can still keep up with hired landscapers half my age

5 likes
Reply
BCTexas

Hi

I started Ibrutinib in October 2017. I have had some side effects like muscle cramps.. Joint pain.. But it goes away. I have high blood pressure because of IB so I started taking blood pressure meds. Overall the drug seems to work well.

BC

3 likes
Reply

You may also like...