ITCHY EYES SORES ON MY FACE.

[piere1]

has anybody out there taking imbruvica 140mg getting soars on there face they get itchy also itchy eyes cant stop scratching my eyes been too dermatologist was taking drugs for it im srry forgot the name of the drug but I stopped as it wasn't working if I stop my cll cancer drug I don't get these soars as at times I couldn't get hold of the imbruvica as they come from America and sometimes they run out that's when I notice the side affects go it got so bad I nearly took my life as I cant go out its too embarrassing and ive slipped into a deep depression don't no what too do as my oncologist doesn't seem too realy care im just a number like everyone else now im on waiting list too see eye specialist for the scratching and infections in my eyes maybe someone else is having the same symptoms if you are how did theat it regards piere1,

[virdieblue]

Piere- I'm just about to start ibrutinib and am hoping to be spared from the problems you're having. Hope you get some relief soon!

Virginia

[Newdawn Administrator]

Piere, I feel very concerned for you in terms of both your physical and emotional health. I recall your other posts where you said you didn't have much personal support around you and this problem with sores and itchy eyes seems to have been going on for quite a long time. You must feel so frustrated knowing you need Ibrutinib but it's the cause of this distress. It does seem to be an unfortunate side effect for some.

Is there a specialist nurse attached to your haematology team who you can talk to about how desperate you feel? Maybe you also need to be seeing the dermatologist again if the last drug didn't work. Could you find a way of making your follow up with the eye specialist more urgent? Maybe a word with his secretary.

It seems to me you are in desperate need of support and reassurance and I really hope you can find it where you are. I'm not on Ibrutinib but have an eye condition so realise how unpleasant it can be. I'm seeing a specialist soon but it's taken nearly 5 months to get an appointment in the UK.

You sound a bit defeated at the moment but please reach out to your medical team and tell them just how depressed this is making you.

I'm wishing you well through your present difficulties.

Newdawn

[piere1 in reply to Newdawn]

THANKYOU FOR YOUR CONCERN NEWDAWN I REALLY APPRECIATE THAT YOU REACHED OUT TOO ME IT MAKES ME FEEL LIKE SOMEONE CARES ABOUT ME THANKYOU AGAIN GOD BLESS PIERE1.

[piere1]

THANKYOU FOR YRE REPLY I WISH YOU WELL WITH YRE RECOVERY PIERE1.

[MsLockYourPosts Passed Volunteer]

Piere - Has your doctor discussed other options with you? Are you seeing a specialist? Perhaps a post with a title including that you are in Australia will catch the attention of others there who are familiar with both the medical system and the CLL specialists there. It sounds like ibrutinib may not be the right treatment for you. Many have inconvenient side effects with it, but when the side effects are having such a drastic effect on your quality of life it's time to aggressively advocate for yourself. It took me a while to realize that I needed to do that when my then doctors were ignoring me. I believe I'm still here because I finally decided enough was enough and came out swinging.

Please stay in touch! There are a lot of caring people here.

Pat

[piere1]

THANKS PAT FOR YRE REPLY BUT THE ONCOLOGIST SAID THAT BECAUSE THE IBRUTINIB IS WORKING I HAVE TOO PUT UP WITH THE SIDE AFFECTS I HAD A TRIAL OF CHEMO IT DIDNT WORK FOR 6MNTHS WHAT A WASTE OF TIME BEING SICK ON THAT FOR NOTHING IM FROM ADELAIDE STH AUST JUST WISH THE EYE PROBLEMS WOULD GO AND THE SORISH PIMPLES ON MY FACE IT MOVES ALL AROUND THE FACE NOWHERE ELSE ON MY BODY AGAIN THANKYOU FOR TRE REPLY GOD BLESS PIERE1,