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..
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.’
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
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?
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!
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.
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.
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.
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.
Hi Michelle, can I ask what the good markers are? Was diagnosed with Mbl two years ago. Cd5 POSITIVE and cd23 fmc7 also POSITIVE and 12% CD 38.. which scare me. My lymph now 6.5 range of 1.0-3.5, and smudge cells present ( i freaked out)!!but had covid one month prior...hope its for that!
You've replied to a post that was last active 5 years ago, with Michelle last active a couple of years ago, which is why I'm replying.
There are two categories of MBL; low and high count MBL. Those with high count MBL have a progression rate to CLL of around 1 to 2% per year and you are right that your higher lymphocyte count could be due to your recent COVID-19 infection.
With respect to your markers, 12% CD38 puts you in the very good prognostic marker category of CD38 negative. "..the CD38- negative group required minimal or no treatment, remained treatment-free for a longer time period and had prolonged survival ." according to this paper; CD38 expression is an important prognostic marker in chronic lymphocytic leukaemia nature.com/articles/2402339
Likewise having smudge cells present is a good prognostic marker. CLL cells tend to have weaker cell membranes than healthy B cells. The weaker the cell wall, the less robust the CLL and it's more likely to die. (CLL cells don't live forever, they just multiply faster than they die from apoptosis, so can gradually accumulate.)
If your MBL has progressed to CLL, then you've found an excellent community to support you. Please read our post for those recently diagnosed with CLL, taking from it what you find helpful at this time. healthunlocked.com/cllsuppo... The most important thing you can do to protect your health right now, is to get up to date with your non-live vaccinations, because even with MBL, your immune system is somewhat compromised, increasing your risk of serious infection. You are more likely to respond well to vaccinations now, so keeping up to date with what's recommended should reduce the severity of any infections you might encounter for which you have protection. See healthunlocked.com/cllsuppo...
Hi Neil thanks so much for your detailed reply. I've been living with anxiety since late 2021 when I was diagnosed with MBL due to 2.8 clonal B cells .with cd5 cd23 fmc7 and that 12%cd38. Not sure but only regular cbc how can they know if that clonal B raises to 5 required to switch it to CLL? Only been asked to do regular cbc to check if persistently doubles. Was 4.5 last year now reached 6.5 not sure🤔and reading around smudge cells are considerate a diagnosis of CLL and not a good prognosis. . I'm pretty confused. So far don't have symptoms except tiredness but always had it. So pretty confusing . As my family doctor sending me to hematologist again cause of the presence of the smudge cells and the increase. 6.5 is the highest. Also I don't have the marker cd19 , which I read is marker present in CLL? Heamatologist last year told me no Cancer, that was the good news, saying only need check of blood every year. But different opinions. In Europe an hematologist said CLL Bennett stage A. So there is a guess a fine line between MBL and CLL stage 0...but I don't understand, one is not cancer, the other one Is!!!
Yes, B cells and hence MBL/CLL cells are identified by CD19 expression and T cells by CD3 expression. People with low count MBL are unlikely to progress to CLL.
A healthy lymphocyte count includes about 70 to 90% T (CD3) cells and natural killer cells. CD3 T cells are further split into helper (CD4) and cytotoxic (CD8) T cells. The balance of the lymphocyte count is made up by B (CD19) cells. The total lymphocyte count should be between 1.5 and 3.5 (these limits can vary slightly with different pathology labs) for 95% of the population - but can climb with infection/inflammation. You'd need to be retested to have your clonal cell count checked to see if you fall into the low or high count category, or indeed CLL territory. However, if an upward trend continues, then eventually the most likely cause will be due to an increase in monoclonal MBL/CLL cells.
Mayo Clinic in the USA have an excellent reputation for CLL research, including identifying useful prognostic markers. This paper by some of their top CLL experts reported on how smudge cell counts can be used to indicate how fast early stage CLL is likely to progress. With my emphasis;
Using Smudge Cells on Routine Blood Smears to Predict Clinical Outcome in Chronic Lymphocytic Leukemia: A Universally Available Prognostic Test
Patients with less than 30% smudge cells had a median time from diagnosis to initial treatment of 72.7 months, whereas the median time from diagnosis to initial treatment in patients with 30% or more smudge cells was not reached.
Even if you are early stage CLL, remember CLL is a chronic condition and there has been a revolution in treatments in the last 5 to 10 years.
Finally, MBl/CLL cells in our blood are in their dormant stage; it's what they do elsewhere in the body that differentiates MBL from CLL. Symptoms like the spleen/nodes starting to grow and other blood counts beginning to drop due to bone marrow infiltration, etc., separate an MBL from a CLL diagnosis. MBL becomes increasingly common in the community with age, such that a significant proportion of older people have MBL.
Hi again, thanks for the info. As far asthe immunophenotype flow cytometry done late 2021 I only had those cd5 cd23 fmc7 and cd38. Confusing! And also cd4 cd8 ratio 3.6:1. Not sure if that is good or bad😒 . Hope my 2.8 clonal B stays there! Since my wbc alternate from normal to slightly over should be a good thing? It's strange that now lymph increased and wbc was normal 11. Last test. I think also I am high MBL? At 2.8. My hematologist didn't even mention
One hematologist told me I'm kind of in the young range as I'm 54 to get it as it is usually in older people. So it scares me I have more time to develop it....or develop other cancers. I Google too much I guess
I was 52 at diagnosis in 2011. If you're going to Google, look at educational or valid medical journal sites, and look at the dates. If you are reading things from before 2020, it may already be outdated.
And please be aware you are continuing a conversation open to the entire Internet, instead of being in a private part of this support group, since the main post is Unlocked. If you ask a question/make a post, and change the Share with "Community Only" instead of "Everyone" at the very bottom, the post is private. One can edit a post from Unlocked to Locked, fix spelling errors, etc. It's not like other social media posts where once posted, that's it.
Thanks Sofia, I'm not sure where to edit to lock the share info??I cannot edit to community only?. I only click reply don't have other functions??. Also I'm curious are you still in MBL?
You can't lock replies to a post, which this is. Only if you make a new post. Apologies for not being clear, I got a full-blown CLL diagnosis that originally was being worked up as an "acute" instead of "chronic" thing, I got symptomatically ill very quickly. Your having MBL is still very early into something that may even develop into CLL.
Yes, beware of Cyberchondia! healthunlocked.com/cllsuppo... Google is way out of date with respect to survival times; CLL is fast becoming an illness you die with, not from. Life expectancy improvements from the treatment drug revolution are yet to show in official results. (Typically someone newly diagnosed is in watch and wait for perhaps 5 years, then has their first treatment - assuming they ever need treatment, so you need to wait 10+ years for new data to be collated and reported to show what's happening.)
While the average age for a CLL diagnosis is around 70, given CLL is a chronic illness, after diagnosis people often subsequently identify signs that it was quietly developing going back a few years. (The median age of our community members is also probably around 60ish, given younger people are more likely to search for online support.) I was diagnosed at Rai stage 4 at age 53 and I didn't need treatment for another 11 years, as like you, I was CD38 negative Indications showed up a few years beforehand in a blood test and I had been struggling with fatigue for the prior decade.
There are 5 different white blood cells in your WBC count, with about 2/3 being neutrophils, so changes in your neutrophil count (very important early infection fighters) can dramatically change your WBC. Just track trends in your neutrophil and lymphocyte count and watch for the indication of any downward trends in your platelets or haemoglobin - though that's unlikely to happen until well into CLL territory - beyond Rai stage 0 or Binet stage A.
Your CD4:CD8 ratio is actually quite good. My pathology lab reference range is 0.76 – 3.93 and as CLL progresses, the ratio reverses, that is, the CD8 T cells increase, so the ratio can drop well below 1.0.
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.
Hi Laura. How are you doing? I’m 41 and in the same boat. My oncologist found I have high count MBL over the summer too. I asked how close to CLL it was and he told me right on the border. I have to go get my 6 month check in the next couple of months so anxiously awaiting. I went on a health kick, eating better, exercising more and taking green tea supplements, curcumin, eating raw turmeric, k2, d3. I feel ok despite being tired a lot which I attribute to being a new parent. Weird thing to have. Hope you are doing well.
This post you've replied to is from 6 years ago, so you may not get a post from the author, given their last post was made 2 years ago. High Count MBL can progress to CLL with a rate of progression of about 1 to 2% per year. Unfortunately, MBL does mean that you already have a compromised immune system, so it's worth getting up to date with the recommended non-live vaccinations, per this pinned post: healthunlocked.com/cllsuppo...
With respect to your commendable response in making positive changes to your lifestyle, the best evidence is for the value of exercise. See: healthunlocked.com/cllsuppo...
Studies for supplements helping with cancer unfortunately tend to generally be of poorer quality. and are often based on microscope observations on cancer cells exposed to the supplement (i.e. in vitro studies). They generally don't translate to effectiveness in human trials (in vivo), often due to the difficulty of achieving a high enough blood serum level without causing side effects/adverse events. Curcumin from turmeric is a classic example of where promising in vitro observations, failed to prove effective in the one human clinical trial I know of, probably because it proved very difficult to get a high enough blood serum level due to poor curcumin absorption and then rapid removal by the liver. The trial was poorly designed and even then showed minimal (contrived) effectiveness. See: healthunlocked.com/cllsuppo...
Very encouraging results were reported with phase 1 and 2 human clinical trials of a pharmaceutical grade green tea (EGCG) extract (Polyphenon E) made by Mitsui Norin, but they withdrew from the oral capsule market, so we have no long term results. The key researcher from Mayo Clinic, Dr Neil Kay, advised not to take over the counter green tea supplements, "because we don't know what's in them". That's because the supplement industry is poorly regulated in most countries, so the quality can be questionable unless you can find reports of the supplier's product being independently evaluated. If you decide to continue with green tea supplements, the phase 1 clinical trial settled on using 4 grams of EGCG per day and that can cause liver poisoning. I only managed 2 grams per day before my liver enzymes shot up.
Hi AussieNeil. Thank you for this wealth of information! I will check it all out. I’d read a bunch of NIH articles which was where I got info on curcumin but it seemed only promising when coupled with, and taken before, ECGC. Definitely will look at the exercise info you sent. I’m fairly fit already and used to live in LA but moved across the country to a colder climate just before my daughter was born. So active lifestyle took a tumble from now living in a place with less activities/sunshine and the slog of parenthood and had to care for an old and ailing dog until she passed last year which then I found out about the MBL. Plus since Covid I’ve worked remotely so activity levels went way down. Got a gym membership so try to go now as much as I can.
Hope you are doing well and thank you so much again.
You've shown some good research skills in finding that paper from over a decade ago on sequential use of EGCG and turmeric, but that was based on in vitro observations. The difficult is achieving a high enough in vivo concentration of curcumin. The human clinical trial I referenced used a proprietary blend of curcumin that tackled the issue of poor absorption, but there is still the issue of rapid metabolism of what is absorbed into the blood stream. There's no liver present with the CLL cells observed on a slide under a microscope
I'm aware of that research, for which an update would be good to see, because the research dates back to before inhibitor drugs (BTKi, PI3ki and BCL2i) were widely prescribed for CLL and chemoimmunotherapy (FCR and BR) were standard treatments. As you note, it's exploring whether there is a synergistic effect from fasting during chemo treatment. Some key extracts:-
Our team is led by professor Valter Longo of the University of Southern California Leonard Davis School of Gerontology in Los Angeles, USA and of the IFOM, Molecular Oncology Institute in Milan Italy. Over the past ten years, the Longo lab demonstrated that periodic cycles of short-term fasting protect mice and possibly humans from the toxic side effects of chemotherapy, while increasing the chemotherapy’s toxicity to a wide variety of malignant cells including breast cancer, melanoma, neuroblastoma, colorectal cancer and CLL.
This new diet is currently being tested in combination with chemotherapy in at least 9 clinical trials ongoing at Norris Cancer Center (3 trials), Mayo clinic (1 trial), Leiden University (2 trials), Charite University (2 trials), University of Genoa (1 trial) based on our previous research at USC. To date, a total of 43 breast cancer patients have been enrolled and preliminary analysis of self-reported side-effects, suggests improvements.
I couldn't find an FMD clinical trial specific to CLL on clinicaltrials.gov
This later letter of concern Fasting in oncology: a word of caution from 2019 and published in Nature Reviews Cancer nature.com/articles/s41568-... is also relevant, where the authors state;
"We accept that fasting and calorie restriction may represent an intriguing springboard for developing future strategies with potential benefits in cancer treatment. However, we would like to point out that the clinical application of fasting and fasting-mimicking diets (FMDs) should only be undertaken with extreme caution, and that the media’s enthusiasm for this approach is excessive and unjustified.
According to a recent consensus article, while the results obtained by fasting in cellular and animal models might conceivably be transferred to and benefit patients with cancer in terms of treatment response, toxicity and survival remain to be ascertained2."
Also, this recent post by nuji further indicates the need for caution with CLL
Ok noted. Thanks for sharing. Just today I found the book 'N of 1' online by a guy who was first diagnosed with CLL in 1991 and was able to use diet/exercise to his advantage. Not sure if I will find anything of benefit in it but will take a look.
I'm glad you noted the exercise component in what Glenn has shared in his inspirational autobiography of his CLL journey, because most people ignore that and just look at the dietary and supplement recommendations. Of note, Glenn has mutated IGHV CLL, which is the best marker you can have, so much so that some CLL specialists see mutated and unmutated IGHV CLL as separate diseases. (Those with mutated IGHV have a significantly statistically longer time to first treatment and respond much better to the older chemoimmunotherapy treatments. Just over 50% of those with mutated IGHV treated with FCR can be effectively cured, with remissions for some of those treated in early FCR trials now in excess of 20 years. In contrast, a remission of 5 years after FCR treatment for unmutated folk is pretty good. Thankfully, with targeted therapy the difference in treatment responses has largely disappeared.)
There's around a 1% incidence of spontaneous remission in CLL, with only 1 in about 30 case studies reporting it for unmutated IGHV (which makes me wonder about the testing accuracy; IGHV mutation testing is complicated and can be error prone. So effectively, those of us with mutated IGHV CLL have around a 2% chance of a spontaneous remission. Glenn doesn't like the use of "spontaneous" because he feels it detracts from his message. He was also diagnosed before we had FCR available - the first treatment that was shown to extend survival time. It was the gold standard treatment for a decade or more. He also had his spleen removed, which he doesn't much dwell on, but it was proved to extend the life of those who had a significant CLL burden. It's possible to have very swollen spleens with CLL, but thankfully modern treatments shrink spleens back to normal dimensions, so splenectomies nowadays are limited to a final step in tackling auto-immune complications from CLL. That's particularly important, given our spleens provide an emergency supply of neutrophils to fight infections as well as an emergency blood reservoir in the event of severe blood loss.
Glenn has definitely been proven right about the importance of exercise. Of note, he made it a priority to try and keep to his routine even during treatment. Most of us can significantly improve our diet, but it's much more difficult to find strong evidence supporting particular dietary interventions, where there's typically a risk of missing out on some important nutrients. See: healthunlocked.com/cllsuppo... My recommendation is to eat a healthy diet that keeps your weight in a healthy range and avoid foods, which have an acknowledged risk of possibly causing cancer.
Thanks Neil. I have a mutated IGVH and other stuff is not mutated/deleted that they test for which is good. It drives me nuts to wonder where this could be coming from but with Agent Orange being the only known culprit I guess I won’t find out. There’s no known history in my family. However my father and his father didn’t live to be super old and I don’t know that they would have tested for it so not sure. Though my oncologist told me I wouldn’t pass it on genetically which is a relief as I have a 1 year old and another on the way.
Thank you again for all of the info. You are a wealth of information. I will give Glenn’s book a read. Happy 2024 to you and your family.
Oh I see. Thank you for pointing that out and again for the info.
And understood on immunocompromisation with MBL. My oncologist talked up a product his father created that’s a nasal spray that’s supposed to keep things out of your respiratory system. Have not tried it yet but may in the future. When my daughter started daycare this year I got hit pretty hard with her bringing home what all the kids had, and it was same time I got diagnosed with MBL. Got sick for months but finally seemed to catch a break the past couple of months but my wife keeps getting sick still and daughter has chronic ear infections.
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