Hi, I'm a 56yr old female from London. I've recently been diganosed with MBL (high count) but the hematologist really didn't explain it all in a way that I could fully understand it. I was left thinking, is this serious, is this quite normal, is this bad/not so bad? I can and have Googled this but I would rather take advice from this forum.
Thanks! Juju
Hi Juju0864,
While MBL is scary, perhaps you can consider it like pre-diabetes. There are CLL cells in your blood, but not enough to confirm that they are multiplying quickly, and your immune system may be keeping them under control.
Even with high count MBL, the risk of converting to CLL is low (~1% per year), and even then the CLL may never progress to needing treatment.
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I went looking for some similar postings in the box on this page labeled "Related Posts" and found this reply from 4 years ago.
healthunlocked.com/cllsuppo...
And this reply from 7 years ago: healthunlocked.com/cllsuppo...
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Len
Thank you Len for taking the time to reply and for searching up past postings, so helpful.
Juju
Hi Juju0864I had a routine blood test in 2011 age 52 and found I had high count MBL. It was monitored by my GP with annual blood tests after initial assessment from the hospital until 2016 when I noticed slightly enlarged lymph nodes on my neck. A visit back to the hospital confirmed it was now CLL. I've been on active monitoring from 2016 by the hospital and next week I actually start treatment for the first time. I certainly had an increase with infections with MBL but learned to be more vigilant. Apart from that I've carried on living life normally. A few bumps in the road along the way during CLL diagnosis but no treatment needed up until now. Everyone is different though and as I understand only 1 to 2 per cent of people a year reach the stage of CLL from MBL and it still doesn't necessarily mean treatment will be needed. You've joined a brilliant forum with some excellent help and information but you may not need anything other than monitoring for years with blood tests and may never need any treatment hopefully.
Juju, Here's a recent video on the topic. It seems they're still learning what MBL really means clinically. Hope it helps inform you. Bigfoot
youtu.be/QZPXsNJBQgY?si=jWf...
There is growing evidence that MBL can impact a person’s immune system and increase their risk of things like melanoma and may make them more susceptible to infections, amongst other things.
It can be easier said than done but it’s important for those with MBL to put the risk into perspective and not be overwhelmed by it. However, they can take some practical, protective steps by undertaking regular skin and other screening checks and by reviewing their vaccination status.
There’s some more information in this post:
healthunlocked.com/cllsuppo...
Unfortunately, MBL is less likely to be routinely recognised in vaccination recommendations for free vaccinations so someone with MBL might have to pay for some of the vaccines recommended for those with CLL.
More research may improve that situation but we know that people with CLL are more likely to get better responses to vaccines the earlier in their disease they receive them and that could be the case for those with MBL so, if paying is possible, it’s worth considering in consultation with your doctor.
There’s more information about vaccinations in one of our pinned posts which is also referenced in the post linked above.
CLLerinOz
Pretty sure the stat I was told was that 1% of MBL patients progress to CLL each year. There’s no proven dietary or medical treatment that will materially change your CLL likelihood.
CLL likewise is a relatively nonaggressive cancer. About 1/3 never need treatment and another 1/3 can wait several years.
So odds are good it’s not a big deal. And even if you roll snake eyes a couple of times, treatments have come a long ways and are effective in most cases.
MBL research is ongoing though and your doctor may have more up to date insights.
It's actually much better than that 1 to 2% per year rate, which is applicable to high count, not low count MBL. From this patient friendly explanation healthline.com/health/cance...
High- and low-count MBLs
Doctors often divide MBL into:
- High-count MBL: Your MBL count is high if your total B-cell count is equal to or over 500 per microliter of blood.
- Low-count MBL: Your MBL count is low if your total B-cell count is equal to or lower than 500 per microliter of blood.
High-count MBL is considered a precursor to CLL. MBL is considered to have progressed to CLL if your total B-cell count becomes higher than 5,000 per microliter of blood. High-count MBL only makes up about 2% of MBLs.
Neil
I was in your shoes 5+ years ago . Now about approaching CLL territory. I hope to keep this progression rate and looking forward to treatment at 100 YO. That's the optimist speaking in me. Let's not wake up the pessimist 😬.
You have got some great explanations. I didnt know what MBL was. I had cll in 2001 and didnt need treatment for 9 years. At the time chemo was all that was available.I wanted to say that even if you get cll, treatment if you were to need it is so different to what it used to be and it is continually changing. Enjoy your life. Its a shock and that seems impossible, Anne uk
Thanks Anne that is so kind. I hope you are Ok x
I was diagnosed a long time ago and have been treated twice. I have problems with other things and I keep falling asleep. We have travelled to some lovely places and I always say to people not to spend their time panicking whilst they feel well. The treatments keep changing and they will find a cure.
Just diagnosed at 30
Hi folks - just diagnosed
Wife just diagnosed with CLL too!
Newly diagnosed with CLL
Newly diagnosed with CLL
