CLL

[Gibbers65]

Hi, I've just found this forum so very new to it. My mum has CLL and has had it for a while but recently she has been picking up lots of infections and is currently in hospital with a respiratory tract infection which she definitely hasn't picked up from anyone else as she's been shielding since March, also she has been getting lots of bruises on her leg. The hospital aren't telling me much but after losing my dad not long ago to pancreatic cancer I'm worried that this is the start of something and I'm not sure what is going on....

[lankisterguy Volunteer]

Hi Gibbers65,

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I will guess that you are in the UK, and the doctors treating your mum are not the most experienced CLL experts. We have some Admins and Volunteers with lots of experince with getting the NHS to refer patients to more experienced CLL doctors and with obtaining infusions of Immunoglobulins (IVIG) to help improve their immune systems.

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I trust that Newdawn may advise how best to proceed with navigating the NHS and IVIG in the UK. Also AussieNeil from Australia and MsLockYourPosts from USA are veterans with IVIG. Neil has an excellent explanation of the IVIG process here: healthunlocked.com/cllsuppo...

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Len

[Newdawn Administrator]

Hi Gibbers,

I’m sorry to hear your mum has CLL especially after losing your dad to pancreatic cancer. This must be very hard on you all. Just be reassured that CLL is not like pancreatic cancer in its speed and aggressiveness and whilst incurable, it is treatable.

I presume you attend your mum’s haematology appts with her? The issue is they’ll only give your mum information about her condition unless she doesn’t have mental capacity but you can ask questions on her behalf. It would be helpful to have copies of her blood results and we’d help you interpret them if you wish. She’s entitled to ask for them. Pay particularly notice of her platelet count because the bruising could be due to low platelets. Also, ask if they’ve tested her immunoglobulins because it could be she has what’s called a low IgG and we need these antibodies to protect us against infection. As Len says, it’s possible to receive IVIG infusions to boost her immune system if it’s deemed to be low enough to meet the criteria. Enquire if there’s a specialist nurse attached to the unit that your family can talk to. Is your mum on a dedicated haematology ward because that will make a difference?

Don’t be afraid to ask questions. It could be that you’re not sure what to ask at the moment and that’s understandable but it would help to know if her present respiratory infection is thought to be linked to her compromised immune status.

Please come back if you need further guidance on this and hope your mum is much better soon.

Newdawn

[Gibbers65 in reply to Newdawn]

Thank you so much, she has had it for years with just 6 monthly appointments to check her bloods and all seems to have been OK so far. Just recently she's had numerous water infections, low sodium a couple of times and she's had to have sodium chloride intravenously and now a chest infection. I will speak to the hospital but with covid you don't get to see anyone to get any proper answers. Thank you for your advice I will definitely try and get her recent blood test... Should be asy she's had 4 in the last 5 days.

[JigFettler Volunteer]

Welcome!

As Len and Newdawn have said - happy to guide you, and try explain stuff. There is alot of experience on the Forum amongst us - how to get around the NHS. (Same for the US and Australia too!)

I suggest attend appointments with your Mum, your Mum may also give permission for you to be told of her medical findings.

If she is in hospital with CLL and infection - the Medical Teams should have done a full immune and blood testing. Xrays, possibly CT scans...

The age of your Mum, and any co-morbidity is also important. I am assuming your Mum has not had CLL treatment.

I hope we can help you and your Mum at this difficult time for you.

Stay safe

Jig (UK)