I ask this question because I just had a CBC and a few other tests and did very well. Doc says I am INDOLENT. My doc was intrigued with a BCL-2 translocation and he mentioned that it might actually be helping me.(that's a switch for a change,LOL) It was on chromosome 18 and perhaps 22. Have to check in with him to discuss. But the bottom-line was that my WBCs were less than six months earlier and my ALC was up less than a point. This makes me wonder,WHAT does your body do to pick up the slack if you have very low neutrophils ? The weird thing was that everything improved for me,especially platelets this last time. But the neutrophils for me have always been very low. My RBCs got better ! Everything got better...but the neutrophils ANC was the only count that was in the toilet. Do neutrophils bounce around and does the human body have a back up system with regard to infection fighting? My IgG was 1400. But why would everything improve and the neutrophils tank?
Does any science/research point to our body ha... - CLL Support
Does any science/research point to our body having a back up immune reaction, when our white blood cells stop doing their Jobs?
Time for some reading and here's a good place to start: en.wikipedia.org/wiki/Immun...
"The immune system is a host defense system comprising many biological structures and processes within an organism that protects against disease." (My emphasis)
You can even do on-line college courses if you wish.
Dr Susan Leclair provides easy to understand overviews of the different functions of the various white blood cells and much more: healthunlocked.com/search/d...
Without the boost to our lymphocyte count, neutrophils would make up about 60% of our white blood cell count, but those other 40% are very important too. Neutrophil counts jump around a great deal - with the time of day, in response to infection and even in response to strenuous physical activity - our body's way of protecting us when we are more at risk of injury.
The immunoglobulins (IgA, IgG, IgM) are just target seeking proteins that lock onto pathogens, highlighting them for destruction by our immune system.
Neil
Thanks Neal. But without the research suggestion(of which I have done plenty by the way) I was really asking from a CLL context . In other words,it just has always seemed strange to me that I haven't heard any CLL researcher suggest that because we don't have the highest functioning white blood cells for instance, maybe some other immune system mechanism picks up the slack in we CLLers?
Given we get infections more often, then take longer to recover from them, are at greater risk of secondary cancers (and death from infections and secondary cancers are the major causes of death in CLL patients), plus we may need IgG infusions to boost our IgG immunoglobulin/antibody levels, there doesn't seem to be much of an indication that there's some other immune system mechanism to pick up enough slack to keep us at a similar level of health to those without CLL.
Obviously other parts of our immune system work harder to pick up the slack, but CLL cells not only seriously disrupt the process by which we make immunoglobulins, but they also disrupt other parts of the immune system - in particular the T cells that normally would eradicate cancer cells - including CLL cells. Not only that, but CLL crowding in the bone marrow reduces our ability to make other white blood cells, like neutrophils.
CLL is well described as a cancer of the immune system.
Neil
We have two immune systems innate and adaptive, the neutrophils are part of the innate SWAT team...
You likely have some immunity from the adaptive system.. but it only knows what it knows.. new germs won't get recognized.
My absolute neutrophil count [ANC] recently tanked to .05 and poor food handling and food borne bacteria etc. is the big nemesis.. bleach, and hydrogen peroxiide wipes are imperative...
Watch for cross-contamination in the kitchen... even with you macrobiotic diet.
~chris
Thanks Chris. it's actually Macro..not micro...Macrobiotic means long life...so
I'd rather stick with that one. LOL So what do you do when your neutrophils tank like that and did they go back up somewhat,I hope?! Neal seems to feel they bounce around.
We think mine was caused by LON from rituxan... late onset neutropenia...
They went down for a few months and are now back into range.. so all is good...
Food borne sickness is the big gotchya with neutropenia, the body can become overwhelmed and sepsis can kill...
Be careful of probiotics etc... there have been cases of probiotic sepsis... rare but the risk is not zero.
You might want to look into being treated with G-CSF, fairly common during CLL treatment, but it can be a benefit at other times as well
en.m.wikipedia.org/wiki/Gra...
Caution is the watch word...
There are lots of neutropenic diets... some cut out suspect foods...
From a newbie point of view....It wouldn't shock me if quite a few of us believed we have no B-cells that are doing their job. But there are B-cells that still work perfectly well,correct? And what about the CLL B cells? Do any of them in actuality still function towards helping an immune response?
Sure.. some might still work... but they don't die when told to do so, that throws the immune system out of whack...
We make 100 BILLION WBCs in 24 hours... lots of stuff going on... 60% should be neutrophils...
But not in your case ... 😮
The problem is that CLL cells disrupt T cell functioning. Healthy new B cells need healthy T cells to work with to select out the best 'mutation' of new B cells antigen receptors. (More particularly the IgVH gene goes through rearrangements to create a unique B cell receptor (from the unique immunoglobulin structure formed by the work of that gene) which is specifically keyed to any new pathogen invaders (or antigens supplied in vaccinations).
Neil
So in the case of lets say me having a1400 IgG measurement,does that mean that many of those antibodies might not actually be functioning properly?
IgG are released by plasma cells part of the adaptive immune system... it has a somewhat limited function based on prior exposure to pathogens...
en.m.wikipedia.org/wiki/Imm...
In theory a new pathogen could enter, overwhelm the innate immune system and the adaptive immune sytem would never see it... BANG ...infection, sepsis, pneumonia or death...
The reason IVIG works well is because it is a 'pooled' blood product. You are getting the adaptive immune system of thousands of people! So the chances of a new pathogen, getting by is lessened considerably...
I get that Chris..but aside from that....my question is :Just because someone has a 1400 IgG,is there a strong possibility that even the antibodies are not working properly,so having a high number doesn't mean a whole lot? Or are our antibodies all highly functional or even more functional than other CLLers' antibodies, if the number is high ,instead of low?
I can't answer that.. but even with a high IgG count and no neutrophils, you have a hole big enough to drive a pathogen through...
All parts need to be functioning properly and in CLL they aren't, that's why our immune sytems are compromised...
I have a headache... 😳
What I find fascinating about the disease mechanism of CLL is that I have seen some of the experts say as an example: Be careful not to supplement with vitamin C or ginseng or whatever,because this will in all likelihood increase the BAD CLL B cells!" BUT I HAVE NEVER really located any research that proved this assumption. In other words any of the immune stimulators like vitamin A and C are likely to drive bad B cell production? But then why are we all so vitamin D happy? My point is, has anyone ever really seen peer reviewed research that would prove that taking vitamin C or any other immune stimulating supplements actually will cause more CLL B cell production. Or is the basic theory the more white blood cells that you have, the more apt they are to become CLL B cells and the harder your body will have to work to get rid of them and these supplements will just create more white blood cells in general for CLL to attack?
I just posted here what Dr. Susan Leclair had to say about Vitamin C a few days ago, try a search...
Vitamin D is still in clinical trials at tne Mayo and in Poland, might see early data at ASH.
B cell populations expand in the pseudo-follicular centres of the lymph nodes, in response to pathogens... its a constant battle field.
CLL cells are clones of one B cell that had its DNA corrupted somehow, so it no longer understands the message to self destruct when it is no longer needed. As with other cancers, those clones just keep on growing by cell division. CLL cells are prompted to divide by various signalling mechanisms, which according to Dr Leclair, can include vitamin C. Due to the millions of different DNA errors possible in CLL cells, what makes your CLL cells grow won't be exactly the same as what makes mine grow, but there will be very broad overlaps.
Bear in mind that for each pathogen you've been exposed to during your life, your body creates specific B-cells with a number of unique B Cell Receptors (BCRs) that are keyed to different, unique parts of that pathogen. When you are again exposed to that pathogen, (memory) B-cells with matching BCRs are stimulated to undergo cell division, creating billions of clones. (This is why lymph nodes swell during infection - it's the growing number of (good) clones growing to fight your infection.) These clones mature into plasma cells that pour out immunoglobulins into your blood to latch onto the pathogen, marking it for destruction by white blood cells.
Because CLL cells are 99.9999999....% genetically identical to health B cells, all the usual immune signalling mechanisms are highly likely to apply to them too (unless DNA corruption has also impacted them). Some of these immune system regulation messengers tell good clones to self destruct when we are over an infection, otherwise our nodes would stay swollen and keep getting larger with each subsequent infection. Importantly the DNA corruption in CLL cells disrupts the process by which immune system regulation messengers tell them to self destruct when they are no longer needed - which is why CLL swells our nodes.
Neil
PS Here's the post which includes Chris's reply with the most recent repeat of Dr Leclair's warning about vitamin C potentially boosting CLL growth: healthunlocked.com/cllsuppo...
Thanks Neal. It's interesting,I really haven't seen any other CLL experts mentioning that vitamin C should be avoided or for that matter any of the other immune stimulating supplements. I am really going to make an effort to see if I can find more examples of the experts advocating that notion. I have brought up Doctor LeClair's video several times on another forum. I do appreciate both Chris and you taking the time to school me.
It was an investigation into what was causing severity level 4 neutropenia that led to my CLL/SLL diagnosis. I've been neutropenic now for nearly nine years.
In the first few months after my diagnosis and before I started doing my own research, a well meaning person bought me over the counter supplements that promised to boost my immune system. I took these along with concentrated green tea capsules to slow my CLL. Two of my liver function tests skyrocketed, so I cut back on the green tea and stopped taking the other supplements after discussion with my specialist. She also told me that there was nothing that I could take to boost my immunity. That's a rather absolute statement and perhaps it is possible to find something that boosts neutrophils without also boosting lymphocytes and hence CLL. However whenever I have looked into the evidence behind supplements that claim to boost the immune system, either the research isn't specific about what cell lines get boosted, or lymphocytes are specifically mentioned. I have since nearly doubled my green tea dose on occasions with negligible impact on my liver function tests, so either I have developed a tolerance to what's in green tea (which is known to impact liver function) or there was something in the other supplements that adversely affected my liver.
Neil
Neal,nine years,wow! Have you seen you neutrophils bounce to normal over that period of time? That's what has always intrigued me. The only time I have seen anything in writing that claimed that it will boost Neutrophils, is from someone who is trying to avoid any medical intervention,whatsoever, who has claimed that she twice boosted them with a certain supplement called Peak Performance.( I believe it's a certain kind of rice bran and mushroom,immune stimulator)That said,this individual did not know her CLL markers or her mutation status. She does, however, have regular CBCs. She does report that her counts are all stable and her WBCs are at around 15. Doesn't substantiate all that much ,because again I don't know her markers,nor have I seen any documentation or her mutation status...and maybe she's one of the fortunate people with a mild CLL,that never will require medical treatment.Then again maybe she has stumbled on to something,too. Just because I haven't seen any documentation---means not a thing..what counts is whether what she is doing worked for her. We are constantly reading Claims that other types of cancer respond well to vitamin C taken intravenously,but wouldn't we think that even hard cancers have cells that would be over-stimulated from a mega dose, leading to bad cells proliferating? I have also read that shiitaki mushrooms and folic acid can increase neutrophils. But it always comes down to whether or not they would also increase CLL B cells. I am going to try to increase my neutrophils through dietary protocols, over the next three months, before my next blood test. I'll just proceed very slowly under the careful guidance of my doctor.
My neutrophils bounced just once barely into the normal range when I was very ill with Cytomegalovirus (CMV).
Whether vitamin C stimulates hard tumours would depend on whether there were growth receptors for it I expect.
With regard to the woman's claims, welcome to the frustrating world of self experimentation, where people don't do the up front study to learn what they need to report to give a level of scientific credence to their experimentation - (assuming that they are not withholding information that doesn't support their claims).
When it comes to fungi, I would advise caution, because for some of us, beta glucans, a common antigen in fungi and molds may be a stimulant: healthunlocked.com/cllsuppo...
I'll be interested in hearing of your results - in total, including any effect on your lymphocyte counts and liver functions!
Neil
Neal this is such a confounding disease. When I first started doing Macro within 3 months I dropped about 30 lbs and then for the next nine months(three blood tests) I saw my wbcs consistently go down and my ALC also dramatically went down. Interestingly enough,my neutrophils increased incredibly to 3.3 from a low of 2.3. And during that time my platelets went from 113 to 172. But this disease is so tricky...it's truly relentless. I have a complex karyotype. I believe that what i am doing is really working for me,but I bet that someone who has a very mild version of CLLand is mutated, really would see amazing results,compared to mine, by dropping the extra weight,walking a lot and eating a healthier diet. But trying to convince some people that they might benefit from making these adaptations is like pulling teeth. That's what FREE WILL is about,so I don't pontificate. Yet the thought of there being natural things that we can do to live a higher quality CLL life,is so inspiring.
You are quite right about CLL being a confounding disease. It is very heterogeneous in expression both across individuals and within an individual over time. We can have periods where we can completely forget about our CLL and other times when swollen nodes, rising ALC, fatigue, night sweats or other symptoms can be very worrying and then again have periods when the illness is indolent.
With regard to your blood count changes, honestly, neutrophil counts bounce around far more than yours have for no apparent reason, so you are really 'drawing a long bow' to accredit your change in lifestyle to a neutrophil increase from 2.3 to 3.3 unless you have seen a sustained upwards trend. The normal range is quite wide, from around 1.8 to 8.0, reflecting that variation. Your platelet change however, may well reflect your improved health, provided it was consistently in the low 100's before you improved your health and has remained consistently in the high 100's. (Remember that some laboratories quote repeatability for platelet tests of +/-40, so it is quite possible in such a laboratory to have two platelet test results of 110 and 190 from the same blood sample!)
With regards to health and diet, I've regularly expressed that a CLL diagnosis can be a wake up call to look at how we can improve our health. Statistically, people in western nations are overweight and don't get enough exercise and that must reflect in their general health. I've also seen enough of life to come to appreciate that while most of us can improve our diet, what suits you isn't necessarily going to suit me and vice versa; similarly what exercise works best varies from person to person. Scientifically, we are only beginning to understand how our genetics and gut microbiome influence what foods best suit us individually.
Neil
Having had ITP for 11 years and having seen my platelets plummet every year and suddenly stabilize after doing a macro diet,I am afraid that I'll have to disagree with you that you require a large jump in platelets to establish what a diet can do. In fact the number one diet recommended by the Platelet Disorder Support Association is the Macro diet. And this association takes the lead from medical doctors as far as what protocols they recommend. So presently, my platelets are at 125,as I type and for many years they were going down 10 -20 points per test. Food absolutely affects platelets. In fact 40% of the ITP patients who tried the Macro diet and the Blood type diet saw either stabilization or an increase in their platelets. This is backed by thousands of patients who have found that diet absolutely affects their counts.(I'll add that it was a medical doctor who convinced me to try MACRO based on his experience with the diet somehow helping other ITP patients that he had treated) And even though medical researchers may not push this notion and may not fund studies,that absolutely does not mean that something may or may not work. I can assure you that I see what happens when I don't eat a certain way and platelets wise ,it isn't pretty. I only know what I have seen with my own eyes,Neal. I watched my ALC count drop nearly 20% within 3 months of giving up sugar,meat,dairy,white flower,poultry and eggs. When I added other healthier foods,I saw all kinds of good things happen,including getting rid of a CLL related asthma like problem and all fatigue. I personally believe that some dietary regimens are better than others and that ANYONE can derive incredible benefits that will in fact dramatically influence their CLL outcome. That's what it's about for me---lessening or avoiding those common CLL symptoms through diet ,exercise and mindfulness and hopefully stopping disease progression. I figure it this way my WBC count was 21.6 in April and last Friday it was 19.8. I have complex karyotype and I am unmutated.....I'm gonna go with the theory that my diet is the fundamental reason that within a two year period my WBC has just slightly increased by 4.4 points. I could be wrong-- about diet...I'll let you know. And of course everyone can have different outcomes from even medical procedures,but that doesn't mean that we can't find lots of examples of people who have also had great results from the same procedures. And Neal,I truly applaud your scientific bent and I find both Chris and yourself to be my two most respected CLL sources on the internet. I anxiously await your co-authored BOOK to hit the bookstores ,"CLL for DUMB DUMBS"..I'd be first on line to buy it.
FLAIR Trial - ErnieUK Final Round 6 FCR Surprises
Taken off ibrutinib
Cycle 5, Day 1 OSU Obin/Ibrutinib/Venetoclax Trial
An uncertain diagnosis
Acalabrutinib 
