Blood tests

[stitcher66]

Hi and happy new yearI was diagnosed with cll in Oct 23.

Im still on watch and wait, and at the beginning I was having blood tests every 2 weeks, and have seen my Heamtologist 3 times. Now I hardly have any blood tests, the last test i had was the middle of last year . Is this normal.

[lankisterguy Volunteer]

Hi stitcher66,

It is common - here in the USA for our hematologists to put a new CLL patient on monthly exams and blood tests until they can determine the rate of change or "tempo" of increasing lymph# or node growth. Once that is determined, then the rate often slows to every 3 months, every 6 months or 12 months.

If your team has you on a 6 month schedule or longer, then your CLL must be growing very slowly or not at all. That is great news, and likely means that you will have many years before treatment will be needed.

Some patients never need treatment and annual testing is adequate. Let's hope that is your case.

>

Len

[BigBrownB]

hi,

I was diagnosed 2 years ago and was put on the watch and wait scheme.

They did test annually which admittedly I was concerned about as I was worried it wouldn’t catch any increase or changes.

Turned out I needed up having bloods throughout the year as I began the menopause as well.

So yes. this is normal but I’d just say if you have any changes to how you’re feeling, go back to the GP or your consultant.

Wishing you a good new year,

B x

[claree_ford]

I (now) live in the UK but I was diagnosed in France. At the beginning blood tests and appointments with the haematologist every six weeks (twice), three months (twice) then annually. Here my check ups and visits started at every six months, then covid happened. Since then I have been having six monthly blood tests and telephone consultations with the nurse - she has been wanting to put me on annual check ups for some time and we have compromised on nine months this time! So, this is quite normal. Frequent check ups at the beginning to establish what they are dealing with, then, once your particular trends and progression have been discovered, often enough to keep an eye on things. The nurse at our phone consultations always checks that I know the signs that would indicate changes and stresses that if I should contact them immediatly if I have concerns... Good luck to you and keep on keeping on!

[Skyshark]

If your absolute lymph count is greater than 25x10^9/L you should be tested more often to check rate of progression.

Haemoglobin < 110 g/L

Platelets < 100 x 10^9/L

If you have any new lumps you need to tell them about it.

Also any B symptoms. Fever of unknown cause, Drenching night sweats (more than 2 weeks), Persistent new fatigue, (unintentional) Weight loss ≥ 10% in six months.

If you don't meet any of the above criteria then you aren't of interest to haematology.

[cjd619 in reply to Skyshark]

"you aren't of interest to hematology"... that made me chuckle

[TobyBelch]

I'm an October 24 diagnosis. Next appointment in a couple of weeks where bloods will get done again, just gutted I'm not allowed to donate any more.Main thing that bugs me is, waking up nearly every day with what feels like a brown ale hangover and the cold I just can't shake.