Diagnosed with Monoclonal B-cell lymp... - CLL Support Assoc...

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Diagnosed with Monoclonal B-cell lymphocytosis (MBL) and scared!

I'm 41 year old with a 6 year history of Chronic Nonallergic Rhinitis causing polyps. After months of Topical Sinus Therapy my polyps improved, I then had sinus surgery to removes blockages and allow for more natural opening a year ago....That helped! I still struggle with allergies symptoms on a daily basis, but is getting better, definitely no sinus infections!.

Everything started around 3 years ago when my allergist performed a flow cytometry, results was normal with the exceptions of my Lymph Count (3,800k) and low Vitamin D. So he sent me to my oncologist. Since...My Lymph's stay around at 3.8 with the exception of last October 2017 my Lymph’s were at 2,900k. Doctor is screening me every 6months as if I was CLL stage 0! I feel like I’m in a nightmare and waiting to wake up.

The most challenging aspect of this condition is there's is just nothing I can do (*medically).... especially when I realized that CLL is probably not my main concern as a High count MBL Vs Low to other kinds of cancers when this is how my cells are behaving at 41… my true hope is that I will revert back to a state where even the MBL will disappear and is no longer seen in these blood test. Is that even possible?

So what am i doing now, since my last (scary..) meeting with my oncologist.

1. Praying + Meditation + Crying and more Praying

2. Running 4 times a week (30 to and hour)

3. Green Tea + Green Tea Supplement

4. Vitamin D (5000) + Vitamin C+E)

5. Juicing (carrots, green apple, beets you name it..)

Also... These are two encouraging articles I have found so far.. when I feel really scared these helps..

Links:

updates.clltopics.org/526-m...

cll-nhl.com/2013/07/monoclo...

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Hi Laura,

I can understand your natural concerns but despite the very slight rise in your lymphocyte count (which could be caused by the regular infections you’ve endured), the progression to CLL from MBL is reassuringly low and by no means certain.

‘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.’

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

You’re doing all you can and anticipatory worry is pointless in this case. Sounds like you have good medical oversight and understanding. Good to see you’re keeping yourself fit and your Vit D levels optimised.

The odds are in your favour and raised lymphocytes are also indicative of our immune system performing their duties. It’s not always sinister.

Best wishes,

Newdawn

P.S. if you’ve used your real name as your avatar, please consider restricting your post to the community to protect your privacy

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Hi Newdawn! thank you for your time with me ;0)

I went to a nutritionist few days ago… he was so surprised to see that my Vitamin D levels have been so low (16%) for years!… ☹ so for couple of weeks I’m on Vitamin D, Turmeric, Green tea, Daily multi, Omega, Iodine, Magnesium and Probiotics supplements. He also gave me Vitamin E but I decided not to take them after reading some articles about how bad they can be. He also recommended a well balance plant-base and protein diet… If I can only get my immune strong enough to fight my Chronic Nonallergic Rhinitis and perhaps get rid of this bad looking cells in my blood.

Question;

Are these “CLL like cells” in my blood can these be OLD cells that have been there for years? Or are these new ones that populate every couple of hours like most healthy cells do?

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Just had my 6 month screening. Everything looks NORMAL… but wow my LYMPH COUNT is at 5.40 10*3/mm3 compare to 3.79... 6 months ago... In reality this is still small increase.. I’m really around 1k*something so still very far from been at "5k".. what concerns me is the increase aspects of this… I was hoping that going back would show a less or the same… but now is higher… Doc docent seem concern. But why then does he need to see me in 6 months! And not in 8 or every year… this makes me suspicious. I have to say.. Im starting to feel less stressed about the process… I was going insane last year!

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Lymphocyte count reproducibility (the degree of variation in the test result on repeated testing) is stated as +/-0.5, so your two readings of 6 months apart may in fact be very close to the same, particularly when you take into account that there's natural variation over time - even during the same day! You may well see your next lymphocyte count lower than 5.4. It's the overall trend that's important, not one-off (negligible) variations. Minimise variation by using the same testing laboratory and routine prior to having your blood sample taken at about the same time in the day.

I expect your doctor is initially keeping a more frequent eye on you. After he has seen the long term trends, you may well see the time between appointments extended.

With respect to your earlier question about the lifetime of B-cells, normal, healthy ones last about 6 weeks, but memory ones last years, which is why it is rare to catch childhood illnesses a second time. The memory cells are triggered to multiply and churn out antibodies that dispatch a previously defeated infection before it becomes established.

Some clever studies with heavy water have determined that clonal CLL B-cells do die. It's just that they replicate faster than they die. I would expect that with MBL there's a similar situation, but they most likely aren't replaced as quickly.

Neil

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Thank you AussieNeil...

*every time I want to freak out I always go back to your response.

You are truly helpful!

Questions:

1. Is there any links to drinking (wine... 2/3 glasses a night) and MBL or CLL. I’m recently cutting back to around 3-5 glasses on weekends only.

2. Where can I be up-to-date with latest on MBL studies/findings?

Happy Thanksgiving!

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Hi Laura,

1) There are well known higher risks of developing some solid cancers with alcohol consumption, mainly along the gastrointestinal tract: academic.oup.com/annonc/art... . Latest research shows that there is no safe level of alcohol consumption, but with the exception of Agent Orange exposure, we don't really know what environmental exposure can cause the development of CLL. Given you already have a precursor to CLL, it makes sense to keep your body fit and healthy and reduce stress on it, in particular on the liver, as keeping our liver healthy is so very important for our general health, particularly should we ever need treatment. That said, CLL specialists generally aren't concerned about what's considered acceptable levels of alcohol consumption, allowing it even during some CLL treatments.

2) Probably the best way to keep informed on MBL developments is to have a Google gmail account and set up alerts for new MBL research. You will still need to get some assurance of how reputable any reported research is and you are welcome to ask about that here. We do report MBL related research, but such reports are infrequent and unfortunately if the post is a locked one, the current implementation of HealthUnlocked's site search doesn't include them.

Keep healthy,

Neil

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Hi Laura,

Sounds like your doing everything you can and have a great medical team. I too, was pretty scared at age 55 diagnosed two years ago. They say I’m watch & wait stage 2. Yep stage 2 scared me too, but soon decided to live my life and Enjoy it! So far so good! Now my doctor said he just needs to see me every 6 months instead of every 3 months- I’m thrilled with this! Worry will just make things worse. My motto is let go and let God handle.

Michelle

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How are you doing ;-)

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Hi! I’m still W&W, stage 2 and I actually had a doctor visit yesterday. My WBC went up to 40 and my doctor still said that is no problem. He said he doesn’t see me getting worse but if I do there is a pill that would help me. I am blessed to have a lot of good markers. I go to him(oncologist) every 6 months! Yay! My tiredness is usually due to my stroke I had 15 years ago, but still do good with that too.

How are you feeling? 😉

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Amazing! so happy for you :) You inspire me!

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Hi Laura, I was also “technically” diagnosed with MBL but my oncologist believes it is just a precursor to CLL when she looks at my specific biology. She treated me the same as stage o and I am seen every 3-4 months. I agree with your regimen but understand that there is no definitive data on the green tea and that you would need to drink a lot to get any benefit, if any. I still have a cup a day though! I hope you are well.

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NewChallnge are you still seen you doc 3-4 months?

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