Introduction

[cartwheels]

Hi about to start treatment on ibrutinin for 17p been in ww 2 years feel fine other then the usual tiredness still working etc any tips grateful

[Anilbhard]

I suggest not to worry much as it is safe medicine. But read the precautions etc and except a few irritants like less appetite, occasional initial dystentry, fatigue, you will start feeling better . But a word of cautious: in case of any infection don't take any other antibiotics without consulting your oncologist.

Good luck.

[thompsonellen]

You'll start to feel better soon. Don't fret when your WBC is much higher next month. It will come back down. Drinking lots of water helps with side effects which for me were relatively mild. The occasional high fat meal still send me running to the bathroom, but I shouldn't be eating them anyway. Come up with a strategy to take your pills at the same time. You'll be on them a long time and it's easy to get sloppy later on. Anyhow, for us 17p people, ibrutinib is a life saver, so count it among your blessings. Keep us posted!

[cartwheels in reply to thompsonellen]

Thanks for the info I must admit I eat anything and everything and still like a drink. Not changed one jot since dx but might have to make some sacrifices now cheers

[thompsonellen in reply to cartwheels]

The only dietary changes every medical professional agreed on was to get down to 2 drinks a week. And I managed to do this though once in a blue moon, I will indulge myself. Doesn't help my most regular companion is really, really into hanging out at craft brew pubs.

[Jacksc06]

Moderation in everything is a good benchmark.

[Anilbhard]

Yes, moderation in drinking is the key. But otherwise drinking plenty of water is a must. Good luck.

[cartwheels in reply to Anilbhard]

Thanks.i do like a drink and at present probably drink a bottle of red and week plus some beers

[tryandtry]

Hi, and welcome.

I've only been on Imbruvica for a few months, so I'll leave most of the tips to others. My best overall tip would be what my doctor's office told me upon starting - treat any side-effect quickly, before it becomes a problem. I've had stomach/bowel problems, which responded well to a quick dose of Immodium A-D; same thing with a rash and Benadryl.

If you didn't see the Ohio State "James" (department?) presentation a few weeks ago, I urge you to find it in the archives and take a look. It's long, and complex in places - but it shows results of Imbruvica studies. It works well on people like me, who have had CLL for a long time, and undergone other treatments. However, the results on patients who haven't had prior treatment is phenomenal! Take a look; it should be VERY encouraging!

[cartwheels in reply to tryandtry]

Thanks so much

[Hoffy]

If you have not started and can get in a clinical trial with I plus V that would be good as well.

There are four or five trials around the country for this.

[Hoffy]

The trails are for treatment naïve patients so if you haven't started yet that would be a good option I am in such a trial and I am 17 P delete it So far it is going well. The hope of the trial is to knock down the CLL so far that you can get off all drugs. Imbruvica is not as strong and has to be continued and was 17 P deletion sometimes the sale start to mutate.

[cartwheels in reply to Hoffy]

Thanks for the info keep me informed please

[KAS8]

Hi cartwheels. How are you getting on? X

[cartwheels]

OK thanks had a low mood swing as it dawned on me that treatment is about to start and the life changes in was going to haverify to make ie drinking etc. But also decided to go cold turkey on my anti depressants feeling okay now just want to get started how about your good self x