Repeated major infections

[CiaraAnnJosie]

Hi..my mum has cll since 2001 and she has had 4 major infections from Sept on..she was on imbruvica but became too ill to continue. They just can't seem to find source of these infections...she gets horrible fevers every 4 hrs..freezing cold shaking then hot ..sweating etc. Doctors say its nothing to do with her cll and indeed her bloods have shown nothing major except elevated white cells i.e infection. She gets weaker with every infection. Anyone out there relate?Heart breaking.

[AussieNeil Partner Administrator]

CLL compromises the immune system, so it is strange that your mum's doctors don't consider CLL as a factor. Can your mum find a CLL specialist near her? If you lock your post (edit it via the 'v' under your post and share where she lives), other members may share specialists near her.

Given your mum has presumably had CLL for some time, she may have low immunoglobulins and could benefit from IgG infusions. Seeing a specialist could help her find an alternative treatment to Ibrutinib too.

Neil

[MsChief in reply to AussieNeil]

Aussie Neil- is that your picture with the straw hat on? How handsome you look. Agree his Mom needs a CLL expert NOW.

[CiaraAnnJosie in reply to AussieNeil]

Thanks Neil..I am trying to get her haematology consult to liaise with only cll expert in the country as of tomorrow. Shes too sick to travel to him.

[MsLockYourPosts Passed Volunteer in reply to CiaraAnnJosie]

Ask that they test her IgG - simple blood test.

[Irishcll]

Hi Ciara

Great to see you join this group and great advice from Aussie Neil. I hope contact is made with the CLL expert and it brings some positive news.

Michael

[CiaraAnnJosie in reply to Irishcll]

Thanks Michael..found out yesterday cll is in mum's liver..treatment was to start today.