Exhausting HC MBL

[Lunagal]

Hi I am Ali just diagnosed with HC MBL. I am exhausted all day hence why I demanded blood tests. I can't figure out why the medical profession wil not listen to the people who suffer this condition. They could learn a lot from us! So glad I found s support group I felt isolated afraid and alone W&W is stressful.

[Newdawn Administrator]

Welcome Lunagal and glad you’ve found our supportive site.

Are you describing the ‘health condition’ (HC) monoclonal B-cell lymphocytosis which is sometimes but not always a pre-cursor to CLL? This excellent description is from Professor Chris Fegan;

‘So what happens to MBL patients with clonal CLL cells but have fewer than 5,000 million per litre of peripheral blood? Studies have shown that MBL is very common indeed with up to 3% of normal blood donors over the age of 60 having MBL and we now know up to 50% of people age >90 have MBL!!! There are some studies claiming that anyone over the age of 70 has MBL!!! In keeping with CLL, the relatives of someone with MBL have a fourfold increase themselves of having MBL.’

cllsupport.org.uk/cll-sll/s...

Further to this, it’s said that;

‘However we now know that in any given year only 1-2% of patients with MBL progress to CLL compared to 5-7% of patients with Rai stage 0. Thus in 10 years only 10-20% of MBL will progress to CLL. Although some studies have shown a higher risk of infection in MBL patients compared to normal people this is still significantly fewer than that seen with Rai stage 0. Furthermore those patients with MBL who do progress to CLL almost universally have lower risk CLL and a much better prognostic outlook.’

I suspect it is for this reason that many haematologists do not become too excited by MBL because it cannot automatically be assumed to develop into a full malignant blood cancer.

Do you have swollen lymph nodes perhaps suggesting a more SLL (small lymphocytic leukaemia)? The late Dr. Terry Hamblin says this in relation to MBL;

‘For a rule of thumb, if you total lymphocyte count is less than 10,000 then you probably have MBL not CLL – unless you have enlarged lymph nodes, when you probably have SLL.’

It’s certainly true that blood levels don’t always correlate directly with how we are feeling and many people experience fatigue at very early stages and particularly where there’s evidence of swollen nodes/ spleen etc it seems. I’d urge you to ask your doctor to explore further however because the cause could be found elsewhere particularly in your vitamin levels. Overwhelming fatigue shouldn’t be but sometimes is a feature of MBL. However, that doesn’t help you at all if your doctors are not acting on your presenting symptoms. There can be so many additional reasons for severe fatigue and they need eliminating. Perhaps you have other medical conditions?

Best wishes and hope you find some answers soon.

Newdawn

[DaleFL in reply to Newdawn]

I agree with everything that Newdawn said. It is important to rule out other conditions and sources of fatigue. CLL is very confusing. Each of us is different. You need a good primary doctor and a doctor who specializes in CLL.

[cllady01 Former Volunteer]

Lunagal, in light of Newdawn's informative post regarding the need to ask for some further checking for possible fatigue reasons beyond the MBL, you might ask about your thyroid levels.

I agree with you regarding the seeming disinterest in fatigue by Drs. but there is some acceptance that it comes with the diagnosis of CLL.

I have found that taking a good brisk walk (and not everyone is able to do that) helps to lift some of my fatigue. Making myself get up and go for the walk is more difficult than the walk--and, I feel refreshed (and a little righeous) after! : )

[Lunagal in reply to cllady01]

My thyroid is fine and so are my orher blood results. Like many people! You're right about walking for sure. I have been a bit lazy lately succumbing to this. Must get our and about again and walj my dog! Thanks!

[DaleFL]

I was in the same position as you. However, my absolute lymphocyte count has increased so I am now CLL. I am always fatigued. It has been very hard. But the people on this forum are great. They have given me lots of support. I know I am not alone now.

[Lunagal in reply to DaleFL]

I am so sorry to hear that you have CCL. I imagine one day I'll be posting the same. Life is challenging but the way I look at it as I have 55 good years, many dont eh? Positive!!