Anyone else had issues with this sort of vague diagnosis? Mercifully, I'm seeing a new consultant tomorrow as the previous one has retired/driven me nuts. On three occasions, he told me "You have CLL"
And yet, I have way under the 5000 cells "target" in my peripheral blood; my lymph nodes are 'borderline' enlarged; and in the letter to my GP he says that I have "CLL or maybe SLL" but in the same sentence he also says "which is why it's called MBL". (The % of CLL 'intrusion' in my marrow = 20% of the nucleated cells. No, I have no idea what that means, either)
Seeing Dr Claire Dearden tomorrow. She's a much better communicator and will hopefully make sense of it all.
Very frustrating when there is so much ambiguity regarding your diagnosis. Please keep us updated as to what Dr. Dearden says.
Although my husband is the one with the CLL, I spend a lot of time trying to figure everything out that I read or what descriptors mean and their function. Just wish I was a faster learner!
I'm sure your husband appreciates all your support
Hi! Yes, I know what MBL is. The point I was making is that MBL = <5000 in the blood stream and with "no other signs of a lymphoproliferative disorder". However, I *do* have other signs despite being below the 5000 level. All quite baffling/interesting. Anyway, will see what Claire has to say, tomorrow. She is, it seems, the expert in this field - I'm sure she'll clarify things.
If it helps, and easy enough to understand- you have CLL.
All the other designations are subsets to help doctors communicate with each other and with patients.
They are fine differentiating points chosen arbitrarily but shouldn't change the way you are treated or observed by your medical team.
You have CLL cells throughout your body, how many cells and where to find them is the only difference that is helped by a sub designation of MBL or SLL.
Agreed, however I’m not obliged to inform my insurers about MBL, I am for the others. Also, another consultant treating a different condition I have is interested in how CLL might impact on his possible future treatment suggestions
Also, it’d satisfy my intellectual curiosity
Anyway, it’s all interesting stuff and I’m intrigued to find out what the new specialist’s opinion/diagnosis is
OK, so a quick update: just saw Claire Dearden and (as I suspected) she said it's MBL. I'd always felt that my previous consultant was somewhat over-dramatising the whole thing, and seems I was right. Her advice - no need to treat anything; have a annual blood test just to keep an eye on things; generally, just forget about it. Yay!
As Chris says, the risks of developing CLL are relatively low.
‘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.
When we became able to measure these lower levels of clonal B lymphocytes it was assumed that these smaller clones would merely grow and MBL patients would develop CLL. 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’
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