Early CLL

[Suki581]

Hi I’m 48 diagnosed December 2020 with cll I’ve been ill since June and have now been diagnosed with a mass in my adrenal gland which they assure me isn’t cancer just waiting for appointments. They found mine as I was struggling to see anyone face to face due to covid in the uk and I requested blood tests ! I’m on W+W . I’ve swollen glands blood spots and constant headaches dizziness but have been assured by hematologist it’s not the cll . I know I’m very early on with my cll when I see everyone’s blood counts etc on here but any advice thank you my wbc is only at 16 and lymphocytes at 10 so very early

[JigFettler Volunteer]

Hi Suki!

Firstly Welcome to our Forum. Here we understand CLL, living with CLL, choosing treatment, what and when - even if... and importantly for you I would like to think - we know uncertainty.

You have in addition to a new diagnosis of CLL - tough enough - and adrenal lump and symptoms your Haematologist says is CLL unrelated.

Swollen glands - maybe CLL - probably Lymph nodes - what were you told about them?

Blood spots - can you elaborate? Do you mean bruises?

Headaches and dizziness - that is harder to explain in CLL terms. Do you get pins and needles in fingers and or lips? Any breathlessness?

At 48 you are relatively young!

And all this mid Pandemic!!

It helps to share more of your blood count numbers. Ls of 10 is low and is early. Mine were 6 at diagnosis. I got the lymph nodes though! What are your platelet count and Hb?

There is a lot to learn. You must guide us and others as to how much you want and how fast. We are not doctors - just fellow CLLers. Many are pretty expert at being CLL patients. That happens with time!

There is a lot on this site.

In the "pinned" posts - very helpful and extensive guides for starters.

Share with us how we can help.

Above all - calm, breath and understand CLL for the most of us is a long journey.

Jig

[Suki581 in reply to JigFettler]

Hi thank you for your reply. I have small freckle looking hemanganoma spots ( my gp said) they are spreading chest abdomen and up my kneck only happened in the last few months I do have an hemanganoma growing in my front left lobe of skull and that has become uncomfortable . My hematologist is aware of swollen glands but said she doesn’t know anything about glands! Cancer team is aware of them there in my kneck permanently and under arms and groin had several lots of antibiotics over the months and iv antibiotics not shifting. Also on ct scan showed prominent hilar node next to lung ? I’m with endocrine hopefully if not cancelled next week. I’m just at a loss with the cll questions to ask , is there anything I should ask that would tell me how long down the line I would be before looking at treatment. My iron level is only slightly down. Thank you again

[JigFettler Volunteer in reply to Suki581]

May I ask are you in the UK? Jig

[Suki581 in reply to JigFettler]

Yes I am