burning sensation on my scalp

[jroon08]

I am Anja (61) from the Netherlands. I have had CLL since 2010. FCR in 2012.

I am participating in the ACP 196 study since March this year. Then I started Ibrutinib. It has gone well for a while but since a month I have a very burning sensation on my scalp, and stitches and hair loss. Also nerve pains in my body. I have had a nerve block that did not help. I hope that someone of you recognizes this and has a solution for me.

Wish you all the best!

[lankisterguy Volunteer]

Hi Anja/jroon08,

I suggest you see a doctor immediately, to check if you have shingles. Treatment with large doses of antivirals can reduce symptoms and may limit further nerve damage.

I am confused by your mention of an ACP 196 study and taking Ibrutinib.

ACP 196 has other names: Acalabrutinib/ CALQUENCE and is usually considered an improved 2nd generation of Ibrutinib/ Imbruvica so it sounds unusual to have both in the same trial, unless your trial is comparing Ibrutinib to Acalabrutinib.

Len

[mgh348]

I am also wondering why you are on ibrutinib after being on acalabrutinib. Please let us know your situation.

[jroon08 in reply to mgh348]

A trial is comparing Ibrutinib to Acalabrutinib.Unfortunately I got Ibrutinib. Thank you for your reaction.

[mgh348 in reply to jroon08]

Thanks for clarifying. I hope you get help for your problem soon. Have you reported this to the doctor who put you on this trial?

[jroon08 in reply to mgh348]

I have had contact with the trial doctor , they are now testing if it is herpes.

[Hoffy]

I am on I but have not had what you describe.

Just a couple small sores on my scalp.

Their usual issues like mouth sores and for fingertips