CLL Rash

[Fastbike14]

Hi, I'm 62 and been on Ibrutinib for 3 years. Treatment is going well and blood results are normal for the first time since 2011. Previously treated in a clinical trial called Artic Trial. It was brutal several admission to hospital , pneumonia and fluid on lungs. Now I'm retired as I constantly picked up infections at work. I have developed a rash on lower right leg and both forearms. It comes and goes, red in colour. Seems to move from one part of the leg to another leaves behind a slight discoloration . Trying E45 itch cream and resisting the urge to scratch. Best wishes to other CLL Sufferers

[CLLCalifornia-USA]

It is such a unique disease. What works amazingly well for one person may not for the next. Even our symptoms can vary from person to person. I'm hoping the nasty rash will dissipate very soon. I'm excited to read you've been on Ibrutinib for three years. I just started in January and so far I'm doing well. Kindest regards, Sally (USA)

[Fastbike14 in reply to CLLCalifornia-USA]

Hi Sally, thanks for support. I'm feeling the best I have for a long time and hope the rash will go. Don't want to stop treatment as it's working so well. Not sure if rash is connected to ibrutinib or not. Should go to doctor for diagnosis!!! Trying to stay away from medics had my fill of them over last few years.

[cll2013]

My "rash" has been active for 7 months. Front & back of legs, thighs, shoulders, some on arms. Only retreated when taken off Ibrutinib 2 weeks ago. Still on legs. Not sure of next step when blood check will be dinne early in September. Rash sounds simple but it was significant so not simple.

[Fastbike14 in reply to cll2013]

Hi, your rash sounds much more extensive than mine. Shame you had to stop treatment. Hope things work out for you. Keep in touch it helps to talk to people in the same or similar situation. All the best Fastbike14

[Roydeane]

You can also investigate any Acalabrutinib opportunities / trials that you can get in on. Less side effects. Its in its 3rd phase of trial and needs to become available... now.

[Fastbike14 in reply to Roydeane]

Thanks will discuss with my consultant next month. Not sure if this is available in UK. Ibrutinib is funded via cancer fund costs £76,000 per year per person.

[cougher4]

I have been on Ibrutinib for 4 years 420 mg. In addition to lung cancer I have Aspergrillus mold growing on my lungs. The treatment for that is Voriconizole . After 30 days of that my forearms looked like raw meat .Itchy and burning my dermo perscribed Bethamethasone Dipropionate Ointment 0.05% . They also cut back the Ibrutinib to 140 mg .@ months have passed ,rash gone (but not forgotten) and cll seems ok . Good luck .

[Fastbike14 in reply to cougher4]

Hi, thanks for your reply. Sounds like you have some really tough things going on in your life. By comparison my rash is so minor. Thanks for medical ointment recommendation. I'm making a list to discuss with GP

Take care and best wishes