Different appointment ( Covid 19 )

[Duder]

Hi just had Avery disappointing telephone appointment which was supposed to be face to face appointment with my heamotolist .over 2 hrs kate not my consultant in the end someone I never seen before ! I explain fatigue issues and mouth ulcers! & he said that isn’t anything to do with my Cll or not side affects from Ibrutinib treatment!! But in past have been told it is feeling very confused and anxious!!! Sorry for rant

[AdrianUK]

Was it a junior doctor ?

[Duder in reply to AdrianUK]

Not sure 🤔 calmed down a bit know but literary been told none are side affects of Cll or treatment!

[cllady01 Former Volunteer]

Duder, check out the link below for mouth sores while on Ibrutinib: some may not be ulcers, but, it is evident, there is some experience that mouth sores occur of different sorts and at least so while on Ibrutinib and other BTK inhibitors.

I hope this helps you to get some relief from the anxiety and maybe find a good solution to your mouth sores.

There has long been a lack of understanding by Drs. in regard to fatigue. It the source of the fatigue that is important to get to. You might want to get a GP appointment to check on your thyroid levels and see if your ferritin and B-12 levels are low. These can among other things, contribute to fatigue---but there is also some underlying possibility of there being a connection to CLL itself, with so many reporting the problem.

So, hang in there, you are among friends here, and there will be others coming to reply to you.

[Duder in reply to cllady01]

Thank you for info , maybe being daft but where’s the link !!

[cllady01 Former Volunteer in reply to Duder]

Sorry, it is my ineptness or a glitch in the digital system---I suspect it is me.

healthunlocked.com/cllsuppo...

[SERVrider in reply to cllady01]

I am on Acalabrutnib + CoTrimoxazole as first line treatment plus subcutaneous infusions of IgG. I have been fortunate with none of the common side-effects of diarrhoea or headaches but have had small mouth ulcers and extensive bruising;. I look like a walking rainbow! The ulcers come and go again without any need for treatment and cause no problems - I am just aware of them. I would say that these ulcers really are a side-effect of a BTK inhibitor, whether Ibrutinib or Acalabrutinib. The data sheet for Acalabrutinib mentions mouth ulcers as a common side effect and also recommends that one should shave with an electric rather than a wet razor as numerous nicks occur which bleed and I have found that to be the case. On fatigue, I have found the opposite in that the crushing fatigue I felt before starting on Acalabrutinib has completely gone, as have the night sweats.

[terryI_uk]

I had both mouth sores and fatigue while on ibrutinib. Diagram prescribed by the trial nurse helped with the mouth sores, the fatigue still persists unfortunately, even after being off ibrutinib for almost 3 years, God bless, Terry

[Duder]

Hi Terry is the tablet Diagram that was prescribed my nurse for mouth ulcers? Thanks in advanced