CLL Support Association
9,325 members14,706 posts

Monoclonal B Cell Lymphocytosis

Seeking some input on starting with MBL and then becoming CLL.

Recent blood tests led to a diagnosis of MBL, and my count was 4,800. The Hematologist said a person isnt CLL until the count reaches 5,000. I also know that only 1 to 2 percent of MBL patients reach CLL per year, which is pretty low, but I'm wondering if being at 4,800 now means I'm likely going to be one of those 1 to 2 percent soon.

10 Replies
oldestnewest

Hiya,

No I don't think you will necessarily be at 5,000 any time soon. Your level is not far from the normal range upper limit for lymphocytes and it could have been like that for some time.

Those who have had CLL and especially those with low levels of lymphs can testify that the numbers go up and down, it's the trend that's important not any one result. You may find it wobbles about the 5,000 level for quite some time yet - let's hope so.

The only thing you might want to do is to get your vaccinations up to date. Here is PaulaS post about looking after yourself - healthunlocked.com/cllsuppo...

Please try not to worry about it and enjoy life!

6 likes
Reply

I had b cell MBL for years and no one explained what it was -i was in complete ignorance. My counts rose steadily hence the then diagnosis of CLL. I have come to terms with it as i cant change what has happened so try to be positive in a bad situation. I am no expert and believe its pot luck who gets what - its in our genes. Sorry i cant be more help however know that if it does change you have lots of support on this forum.

4 likes
Reply

Only time will tell. But it is important that you continue to be monitored by the hematologist. I would be on the safe side and get checked every few months (or whatever schedule your hematologist advised). Also, the advice about vaccines is HUGE. Get all the vaccines recommended for people with CLL. Finally, I would also get all your other regular check ups, including screening for skin cancers each year. There is research suggesting that high count MBL puts you at a greater risk of cancers and infections. It may or may not be true. But it cannot hurt to stay on top of your health and have the regularly scheduled check ups.

5 likes
Reply

Thanks for the input Dale.

Reply

Hi, My 38 year old daughter has the same thing. Who is your doc? We are in michigan but see Dr. John Byrd ..

Reply

I'm in South FL, so I'm seeing a Dr. Liat Dagan at Lynn Cancer Center (Boca Raton Regional Hospital)

Reply

I was diagnosed with MBL when at 5500 and was told it was CLL when count reached 10,000. My count increased over 18 months from the MBL diagnosis to over 10,000 so I was told it was now CLL and over the last 12 months it has steadily risen to 17,000. So it is different for everyone I think and pot luck as to who does or does not have increased levels. I am still stage 0 as no swollen lymphs or other symptoms apart from the Increasing ALC count although I am starting to notice fatigue creeping in some days. I had both pneumonia vaccinations and the flu shot and excercise caution in hotel rooms and on planes wiping down handsets and tray tables etc and touch wood keeping bugs at bay currently. Good luck and stay positive :)

2 likes
Reply

Thank you for the reply. My Father died at 71 and had CLL, but his was much more advanced in the ten years before that. I just reached 71, and I'm only at the 4800 level. I think I'm overreacting with my putting posts on this site, but I'm nervous a bit at the same time. My Father had it, his Mother had it, and her Father had it. I show no other signs; other than, the Monoclonal group of cells with a level of 4800, so perhaps I'll never develop it.

Reply

Reply to the person questioning Vit.C I.Vs.... in my experience the IVs have stabilized my CLL with no enlargement of lymph nodes for 5 years. Plus it helps every cell in the body.

Wonderwoman

Reply

We had a fairly thorough discussion of IV vitamin C here: healthunlocked.com/cllsuppo...

From the research mentioned supporting IV vitamin C for leukaemia, it was found due to suppression of the TET2 mutation cancer driver, a mutation that is rather uncommon in CLL. Others with CLL experimenting with IV vitamin C haven't reported your good results. Perhaps you have this rare mutation, or perhaps your CLL has stabilised in any case - which is not unusual. About 1% of us lucky enough to have spontaneous remissions - which makes it very hard to know whether those of us trying to control our CLL were successful because of what we did, or in spite of it.

1 like
Reply

You may also like...