Angioedema and CLL

[pragnar]

I think I figure out my difficulty breathing. After having several tests and nothing showed I woke up last few days with swollen lips. That made me remember all this strange symptoms I had before my chemotherapy 4 years ago. Any thoughts on Angioedema and CLL.

[cllady01 Former Volunteer]

Pragnar, if you have had angioedema before, was there something designated as the cause? Of course, you need to see a Dr. to get this sorted and the swelling should help you now get at the problem when the tests done did not.

You may have read the following, and I do not recommend self-diagnosis (but, it is your body and you have the clue to present to the Dr. for possible confirmation.)

This NHS rundown of angioedema does say one cause can be a lymphatic disease in rare occasions can be a factor.

Please get to a Dr. and the following list may be helpful in the sorting:

nhs.uk/conditions/angioedem...

Let us know--I hope you breathing has gotten better and not worse.

[pragnar in reply to cllady01]

Thank you. Before chemotherapy I had plenty of things happening, swelling, hives, breathing problems, fatigue. Had tons of testing done but nothing concrete. Doctors suspected Angioedema. Everything stopped after chemo. I started Imbruvica last November and stopped 3 months ago for side effects. I just restarted Imbruvica last week as my blood count is rising. I had started breathing problems about 3 week ago. Thought it was CLL but now I think it was Angioedema. Not sure how they are related but there seem to connection.

[cllady01 Former Volunteer in reply to pragnar]

See your Dr. and tell him/her what you have said here. You system is reacting to something you are allergic to.

[Shedman]

Hi Pragnar. Sorry to read of the angioedema. Are you an allergic type? - any known allergies?

By the way, it might be helpful to respondents if your profile is updated with age and country - but I read your first post and arrive at 59 yrs old.

You say that recent blood tests showed 'nothing'

Seems to me that blood tests always show something, even if it is just varying kidney function values (rare for these to remain perfect as we get older, and SLL/CLL may affect the kidney function too) and some aspects related to inflammation levels. Maybe some are on the low side of the 'normal' range.

Have you been advised to take antihistamines?