As you can tell, I am new to this board. I was Dx in May 2018. From older blood tests obtained from my internist (who is about to be history!), it seems that I have had CLL since 2014 or 2015. He missed the out of range values for WBC and ALC, never told me, and I never got copies. My absolute lymphocyte count was definitively over 5000 in Feb 2015 (WBC was ~12K). I currently am at 10-12,000 absolute lymphocyte count in May 2018 (WBC is all over the place - from 18K to 30K, latest is 20K). No labs done between 2015 and 2018.
Now I have been told that if I have an abs. Lymph count of 10K or more that I should be immune compromised. I don't appear to be in that I haven't had a cold, flu, or communicable disease in about 10 years. No infections, nothing, and we live with 2 dogs who get into everything and they sleep with us. For that matter, I am still totally asymptomatic. My CLL was confirmed by Flow cytometry. By FISH, I have no mutations. By sequencing I am p53 normal and IgVH mutated at 8.2%.
When shall I take precautions to avoid any excessive contact with possible infection sources? None of the Dr's or oncologists that I have seen so far will consider my "old" lab work as relevant as it was not done by them - and there was no flow cytometry data. I was definitely high in WBC and ALC all those years - an now clearly have CLL. Does immune function become affected later in the progression, or am I just a freak of nature?
I also have lots of allergies - especially since I live in California. I am even allergic to my dogs. Allergies get so bad that I go into sneezing fits for hours at a time. That too indicates a strong immune system. None of this makes sense to me. I've seen my flow cytometry data and can tell I have CLL. Am I just lucky so far? Thanks.
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Jonquiljo
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If you are worried about infection the better number to pay attention to is Neutrophils, sometimes called Granules or NK. These are the infection fighting white blood cells. My ALC is around 31 but my Neutrophils are fine.
Ok ... I must be dumb. Most of my tests do not list “neutrophils” in the CBC’s. Is there an acronym for them? Or do they not always include them? Nope, they must be listed as something!
Also, I thought the malignant b cells do not function properly and are also responsible for immune funtion. What step am I missing?
The B cells that are cancerous in CLL are like baby cells...they turn into I think 5 different types of cells. NK are one of these. Not all your B cells are bad....in fact your numbers seem pretty OK. The Neutrophils are part of any CBC test.
All blood cells come from one kind of stem cell in the bone marrow...but in the case of CLL the B Lymphocytes do not fully mature and do not go through Apoptosis and can begin to crowd out the other blood cells.
I don't think mutated B-cells are necessarily baby cells. Some might be considered toddlers or juveniles (or in our case, juvenile delinquents).
If you have mutated IGHV, which is normal and vital mutation, the cells are a little more mature, and tend to be more evident in the blood, lymph, and spleen. IGHV segment is part of the B-cell receptor, which is also called a membrane bound antibody. It's the part that has been to school enough to have rearranged, and passed 2 tests - one that tries to prevent auto-immunity, and one that makes sure the cell reacts to a real pathogen. The vast majority of toddler or juvie B-cells - over 90%, I think I read - die due to failing the quality control tests.
B-cells eventually morph into either Memory B-cells, or Plasma B-cells, where the antibody floats off into the blood, lymph and tissues. I would consider those adult and elderly B-cells, passing their wisdom and experience on to the body for years.
Per my answer to Scott below, confusingly neutrophils can have alternate names. In the Complete Blood Count/Exam (CBC/CBE) they should appear in a section called the differential, which shows the contributing different white cell types that together add up to your WBC, i.e. neutrophils, lymphocytes, eosinophils, monocytes and basophils.
By definition, when you have been diagnosed with a hematological malignancy, you are designated immune compromised. There are a number of mechanisms involved - primarily bone marrow suppression, suppression of the immune system by CLL cells (self protection from T-cells that would normally kill cancerous cells) and an eventual drop in immunoglobulin production. That's recognised in the vaccination recommendations maintained by the relevant health authorities, so as Chris Cllcanada noted, now is the time to get your non-live vaccinations up to date while your immune system is still working very well: healthunlocked.com/cllsuppo...
With CLL, healthy levels of white blood cell counts are only part of the story. Because of the variability of how our immune function is impacted, we can have good counts and still be susceptible to infection and perversely, poor counts and still remain healthy! So really the best guide to our immunity is how often we become ill and how quickly we recover compared to other family members.
You are obviously aware of the risk of disease from pets: healthunlocked.com/cllsuppo... so I hope your immune system remains strong so you can continue to enjoy their loving attention. Unfortunately, I couldn't even rely on friends to take my reduced immunity into consideration, which is why I investigated how CLL impacts our immune system in this post from 5 years ago:
Thanks, my "twist" to this story is that while I was diagnosed in May 2018, we found blood tests from 2014 and 2015 that show I had MCL and probably CLL as far back as 2015. My labs then showed an ALC rising (trending) to 5.0 when tested in 2015. That was 3 + years before diagnosis - for a completely unrelated problem.
We may be able to have poor counts and still be healthy, but (until now) I have not had any kind of illness or infection in 10 years. And yes, I was born on this planet. So, I can't even tell how long it will take me to recover from a problem in that I had CLL likely since 2015, but have yet to get sick or infected to find out what happens. That is strange considering I live in a pretty congested area of the west coast USA.
So even if I hadn't been sick or infected in 3 years, that is unusual with CLL - not taking precautions too. I had a live shingles vaccine about a year ago (not having a clue about CLL) that was the old type - a live vaccine. I had no reaction whatsoever. In fact, the past 3 years has been a time of enormous stress - as we purchased a house and had a major remodel which went bad. (I swear, I wanted to blow this place up!). Either way, I was frequently among contractors who all had kids, etc., and were getting sick all the time. I never caught anything from them either, though we didn't live in the house when they were working on it. The last cold, flu, infection, etc. was late 2008, but that is just for reference.
I mention below that my flow cytometry says that 98.8% of my b-cells are abnormal (though their absolute count varies between 10,000 and 12,000.). I would expect something. I frankly just don't get it. I am really 3 years into CLL. The idiot of a Dr just didn't look at my labs back then.
It's fairly common to find out that we have had CLL for a few years before diagnosis - just as you'd expect with a chronic condition, where about a third of us never need treatment.
Due to ignorance about the need for us to avoid live vaccinations, quite a few of us have been prescribed the live shingles vaccination and fortunately not had any repercussions. The (very minor) risk is there, hence it is not recommended by CLL Specialists.
Think seriously about achieving any activities now that may become harder to achieve later if your immune system does worsen, such as travel. Staying infection free and even obtaining travel insurance cover can become quite challenging...
A third of us never need treatment. Well, if the average age at diagnosis is 65, and (in the US) the average life expectancy is 78-79, just the statistics of overall survival would roughly put 1/3 of us never needing treatment. Its more like 1/3 of us die of something else. But CLL is crazier than that in the variability of outcomes and survival is enormous. It definitely is a wake up call to one’s mortality.
Thinking about planning for the end seems so counterintuitive to me. Travel now, not later. Yes, you’re right. I guess its got to be about quality of life too. It seems that we think we know a lot about CLL, but maybe there is a whole lot more to know than we do. Even the variability of prognosis indicates there are a lot of factors we know nothing about. Nothing is ever random and variable - rather its pretty predictable if we knew what to look for. But it seems a lot more understood than it was 10 or 20 years ago.
Neutrophils can also be called "polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs)": en.m.wikipedia.org/wiki/Abs...
NKs (Natural Killer cells) are one type of T-Lymphocyte and are included in the lymphocyte count, along with B-lymphocytes and of course CLL cells. You need a special test to separate them out, which is rarely done.
B-Lymphocytes normally mature into plasma cells, which are our immunoglobulin factories. Further back in the haematopoiesis process: en.wikipedia.org/wiki/Haema... there are lymphoid and myeloid stem cell lines from which all the blood cells and platelets originate.
Get your vaccinations up-to-date, get an annual flu shot, a Prevnar13 pneumonia vaccine and the new Shingrix singles vaccine, and anything else you doctor suggests, but no live vaccines in CLL, GPs are often clueless about this...
With allergies, you have a more robust immune system than most...
I want to thank you for giving me the heads up about the Shingrex thing....the first round didn't kill me at all....made my arm hurt like crazy for 2 days...but that was about it. I get the booster in Aug or Sept.
Wow. I saw an allergist right before my CLL diagnosis and was shocked that none of my testing came back positive. Not even to horses! Huh? I’ve always been allergic? I also didn’t have a lot of pain from the Shingrix. My heme-onc says my immunity is good for now, and other than no live vaccines I don’t need to take extra precautions. Interesting that this could all be related. Also an interesting aside- - I have not had a fever in over 30 years, not even with a raging case of strep throat. It makes me wonder if I had immunity issues even then 😕.
OK, now I am really confused. I thought people with CLL made immature b cells that didn't work, and that they overwhelmed the good ones - leaving you with essentially very few b-cells to fight off any pathogen that comes your way. I thought a symptom of CLL was frequent infections. According to my flow cytometry, 98.8% of my b-cells are abnormal.
I can find one or two lab tests with neutrophils - the rest don't have them or name them with some acronym that I don't recognize. The recent lab test that I did find with with neutrophils gave neutrophils at 33% but absolute neutrophils were normal because the lymphocytes were way high at 62%.
When it comes to my many allergies, Chris says I must have a robust immune system. How can my immune system be robust of the b-cells are almost all abnormal (98.8)? In fact, why do I even have a normal immune system?
Our immune systems are multilayered with a degree of overlapping functionality. B-lymphocytes are that part of the immune system that kicks in later with a targeted response to the pathogens if our initial line of defense, in which our neutrophils are a significant player, fails to deal with an incipient infection and it becomes established.
CLL cells disrupt our immune system by pouring uncontrolled levels of messenger proteins indiscriminately into our blood - cytokines and chemokines, which make us feel fatigued like we have the flu (and for the same reason). These confusing signals make it difficult for other components of our immune system to respond to genuine signals from the correctly functioning parts of our immune system.
Perhaps your CLL cells are quieter than is usually the case, or perhaps you have most of your CLL tumour burden in your blood, rather than in nodes, spleen, bone marrow, etc, where the CLL is more active. A few years ago it was discovered that CLL cells are relatively dormant in the blood, but active in lymph nodes: healthunlocked.com/cllsuppo...
I wish! I think I am just a few years into this and the ride has barely started. I’ve been lucky in too many other things in my life. I think CLL is just an odd and complicated thing to get sick with. Generally the process is reversed relative to most. Yes, my CLL is likely in my blood ... now. In a couple of years it can be everywhere and anywhere.
Another measure of immune deficiency is your level of immunoglobulins. IgG, IgM, and IgA are the easiest to test in blood, and it's not an expensive test. You should probably have that checked annually or so.
When you do get a pneumovax shot, ask about checking titres - the IgG counts - to see how effective the shot was. You could have almost normal levels of IgG, but still not make many antibodies to the vaccine if your bad clones conspire with the rest of your immune system to suppress new antibody production or produce useless antibodies themselves.
I don't know that they do too many other titres, but I also have counts for diptheria and tetanus. They were not done within weeks of the booster shot, so I don't think they're are a recognized as an indicator of immunodeficiency as much as a need for a booster shot. Most of the people born with immunodeficiencies commonly get respiratory illnesses like pneumonia, so that seems to be the focus of research. I suspect that if the titres for pneumovax come back poor, titres for other recent vaccines will also. Even so, it's still better to get the shot, and make a few antibodies than none at all.
If you don't make many antibodies to the pneumovax shot, you may qualify for SCIG - Subcutaneous Immuno Globulin therapy - depending on what country you live in, your infection history, and other variables.
I've historically had terrible pollen allergies. The few IgE tests my immunologist has done recently indicate dropping levels compared to skin needle prick test, but it's too soon to graph them (only 1 data point). I've had 3 skin needle prick tests in 20 years, and the welts are smaller now. But I doubt that the test serums were identical, so it's hard to say.
I think the itchy eyes I still get are due more to infections now. Even so, dust (which has much pollen in it at my house) still arouses an itchy nose and sneeze for me. As I mentioned above, Memory B-cells and Plasma B-cells can live for years, and still make antibodies to allergens and other pathogens. They are out in your circulation and in tissues, and not as subject to the overcrowding in marrow, lymph nodes, and spleen. Cytokines from the bad clones could still affect them, though. I wish I could find a good reference on this.
I also pushed some some borderline high numbers starting in 2014 and they really had no effect on me and keep in mind the highs and lows our just general guidelines and if i had of worried about it or the GP made a big deal i would have never taken that big once in lifetime 10 days hiking trip through France , Italy and Switzerland or continued to do a lot of stuff while i still could
In April 2016 things got more difficult BUT there is just nothing anyone or Doctor could do at this point and i continued to keep up my active lifestyle
In May 2017 after MY LAST 44 mile trail running race the CLL took a big jump and my numbers almost doubled in about 8 weeks to 21 WBC and 17.5 ALC and now it was time to see a specialist and here get some facts on the suition
So here it is July 2018 my numbers had gone down but have settled in at 21/17 and i see one of the best Cll Doctors in the world Dr Rai and as he said at this point there is nothing he can do that won't be much worse for me then seeing how the CLL progress because my FISH is so favorable there is a very high probability i won't ever need treatment
So while i am quite fatigued and i have had to cut way back on my activities i don't get sick and am just finding new things i can do
For example i had to give up my Sailboat as it's just to much work but now after work i stop by the beach and get on my wetsuit and go for a 20 minute swim in ocean as thats about my safe limit and i just keep going as best as i can and as difficult as it is i try not to worry
So if I were to look at what you just said, it sounds like my life will soon be slowed down considerably. I always thought you treated when you got to that point. How favorable is your FISH, anyway? Thx. J.
A major challenge of living with CLL is how heterogeneously it expresses itself. You can't look at what someone else is experiencing and be reasonably confident that you will follow the same path. The uncertainty of what may happen is one of the major psychological stresses of living with this chronic illness .
I wish I would wake and this never ending story would be but a dream But its not My gp also missed the initial WBC count 2016 Never mentioned it for two yrs then a change at SWM southwest medical a new GP said Hey you have elevated WBC then a 9 month appts tests more appt tests spinal tap and voile' you have CLL... my wife nearly passed out with DX she is a worry type Same situation today nothing to do wait and observe. March 2020 laid off part time income paid our outstanding CC's and then Boom nothing Unemployment was a debacle finally received payment 10 weeks missed no back pay 15 hrs. logged on wait phone menu I am feeling swallowed up or in a whirlpool.. read extensively my ...Dr now is a oncologist he says be happy your sweats and headaches are minor symptoms .. I guess with my children's support and wife doting on me one morning I woke and said " live each day stop waiting to pass.. Jonquiljo I say we had this for so long unbeknownst to us … live for the DAY... I lost so much time researching what dr's are puzzled over ..what good is it … absolutely nothing … Go out take a ride along lake mead shoreline road stop up at Hoover dam breathe ….
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