The recent post on infection risk has me wondering:
Having SLL my bloodwork is all normal. Are we with SLL at risk of infection the same way others with CLL are? I think intellectually I know the answer but would appreciate a plain English explanation.
thanks
Heather 🇨🇦
Hi Heather...
Very good question, and I'm not certain this has been looked at. I would think in small lymphocytic lymphoma (SLL) the degree of bone marrow infiltrate would be an indicator of immune suppression...
This certainly would be a great topic for research...
My gut says that small lymphocytic lymphoma (SLL) is about the same as CLL, even thought the B cells are sequestered in the nodes and spleen...
~chris 🇨🇦
Thanks Chris. What you say about bone marrow infiltrate is interesting and perhaps key (I find out the results of my BMB on the 16th). So the issue may be better viewed as a question about where the critical immune fighting happens - in the blood, in the bone marrow, in the lymph system as a whole? Or?
It seems no one really knows how the immune system works. For example, no one seems to be able to tell me whether trying to stimulate our immune system is a good thing or whether it will “feed” the cancer.
Things that stimulate the immune system, generally increases B cell counts, like high doses of VitC, exactly what you don't want... there is also a good amount of quackery in this area...
We have two immune system, and there are hundreds of authoritative educational websites about how our immune systems work...
Important to be careful however where you are getting your information...
~chris 🇨🇦
Interesting, your comments on Vit C. Worth further reading on my part. Yes, I know to be aware of my sources but always a good reminder.
Vit C comes from Dr.Susan Leclair, you can find her on Patient Power, I have known her for over 15 years... great women... and extremely funny about all things blood related...
patientpower.info/bio/susan...
~chris 🇨🇦
Thanks Scott. The problem with SLL is that our neutrophils and platelets always look normal in bloodwork. If there are normal levels of neutrophils in the blood does one say we’re not immune compromised? Please also see my response to Chris about where the fight is fought.
By the way, my phrase of the days is going to be “wack-a-doo” 😜
Until Neil wakes up this Aussie website has a good brief overview...
Jemorgen and Scott,
Actually Jackie posted about this very good paper some time ago, which explains why CLL/SLL has such a pervasive impact on immunity, which can happen even if quantitative analysis of our blood looks good:
healthunlocked.com/cllsuppo...
Basically it's because the monoclonal CLL cells release cytokines and chemokines that disrupt our immune system in many ways. Only a few years ago it was discovered that CLL/SLL cells are most active in their carefully controlled nodal microenvironment. They are in their most dormant phase in the blood stream.
Neil
Further CLL plays a number on T cell counts, often reversing the numbers of CD4 and CD8, effects natural killer NK cells and so on...
Then there are falling immunoglobulin counts...
thermofisher.com/ca/en/home...
So, its a mess at best...
bloodjournal.org/content/12...
~chris 🇨🇦
Is IVIG routinely given to CLL patients once IGg drops to a certain level, or is it only if there are serious re occurring infections? I understand it is an expensive treatment so maybe it is reserved for those who are very ill? I worry though that waiting until that point might be too late for some.
I was going to bring this up. The longer we live with CLL/SLL the less effective our T cells function as they should. Two different levels of immunity are at play.
😱 eek Really?
The link boots me out of the HealthUnlocked app so I can’t open it using my IPhone. I’ll check it out when I can get to my computer. Thanks for responding.
I don't use the HealthUnlocked App, so I can't check out why this may be happening. Alternatively, you should be able to access this site via your iPhone browser, or perhaps this direct link to the article may work:
sciencedirect.com/science/a...
You shouldn't have difficulty via your computer!
Neil
Hi Neil - I managed to get the article on my computer but I'm afraid it's a little too complicated for me (I have a masters degree, just not in science). Are you aware of any more basic explanations? thanks Heather
Perhaps this post is a better fit?
healthunlocked.com/cllsuppo...
I appreciate that you are coming from an SLL perspective. My CLL/SLL started off as 'SLL' and I'm pretty certain which node it originated from. As Scott mentioned elsewhere, CLL/SLL are considered the same disease and that's been the case since the World Health Organisation merged them in 1994:
So what really matters with regard to answering your question is how CLL/SLL dampens down the immune system and how (or indeed whether) that can be detected by blood tests. The problem is that quantitative numbers don't tell you about qualitative performance. Counts can look excellent, but performance can be woeful. A good analogy in this case is two opposing teams in sport. You can have the same numbers of players with the same position relevant skill mix and yet one team can absolutely trounce the other team, because of how well the individual players work together as a team. So you might look at CLL/SLL as a few extra rouge players on the field that interfere with play, tripping up players on the same team, intercepting the ball and passing it to the other team and so on.
In CLL/SLL this is well evidenced by immunoglobulin levels. As you can read elsewhere, about 85% of us develop low immunoglobulln counts (IgA, G, M), yet 85% of us don't need IgG infusions to remain relatively free from dangerous infections. The internationally recognised requirement for being prescribed IgG infusions is both a sufficiently low IgG count (country dependant) AND recent severe infections typically requiring hospitalisation. Some of us can have low counts of infection fighting white cells (neutrophils) or immunoglobulins and remain relatively infection free, yet others with perhaps higher counts can be regularly ill.
You asked a very good question.
Neil
Thanks muchly Neil. I love your analogy. This discussion has led me to understand that for one thing the immunity battle is not fought exclusively in the blood which is what I had believed previously. Gradually I’m piecing together a better, more fulsome picture how CLL/SLL lead to compromises immunity and, in particular, the role of the bone marrow. I’ll be interested to see what numbers are this Tuesday. I’m also wondering if some of the gallons of blood they took went to an IgG test.
I really appreciate the extra effort you took to find some literature that makes sense to my non-scientific mind.
My labs are all normal, but my IgG, when diagnosed , was rock bottom, and I was sick all of the time. IVIG has turned that around. I have also made adjustments, as I’ve read suggestions over the years. Most of them have just become automatic, none of them extreme, and I occasionally laugh at myself when I realize that I’m doing something that I never would have done 20 years ago - nuckle on elevator buttons, shoulder or pinkie to open doors, etc.
My neutrophils don’t tell me anything, and there have been times when I stretched the interval between IVIG infusions without consequence - other than a “daddy” talk from my doctor suggesting that I not do it again.
Most of us go through a period of hyper vigilance when new, before we settle into our own new normal. I think that how our bodies compensate for immunity issues varies from one patient to another, as does the way each of us adjusts, so as to stay as healthy as possible, but still live what for us is a life full of the most quality possible. We could all become “bubble boys” - dating myself with that one - but most of us do just fine using common sense precautions.
Thanks for responding MsLock. It’s funny but I’m less of a germophobe than I used to be - but I still have an aversion to doorknobs and elevator buttons lol. Other than disease-specific symptoms I’ve been very healthy both prior to and following my diagnosis 7 months ago. That’s why I was wondering about immunity. I’ve not had my IgG tested although I suspect they just did it last week when they did a BMB.
Now that I’m facing treatment I’m worried about infection.
IgG is a blood test, so may not have been done along with a BMB. Mine wasn’t. Facing treatment leaves us with all kinds of thoughts running around in our heads. Mention, your concerns to your doctor, and get copies of your lab results during treatment. It will allow you to follow your absolute lymphocyte count. Some have no problem with lowered neutrophils (I didn’t), while others need a boost to keep them up. Talking to your doctor before treatment starts about how he / she would deal with a drop in neutrophils, should you experience one, should help to give you any information you might need, and some peace of mind. Also discuss how any indication of an infection should be handled.
Good advice. Thanks. Can I (with SLL) assume that all my bad lymphocytes will flood into my blood as happens with people with CLL?
I agree. Dont think it necessary to wear a MAsk when flying! 😷 anyone else with a comment about that?
Thanks I’ll keep trying
Hi Jemorgan,
I have SSL and found recently that my hemoglobin was extremely low which was why I had a period between December and now where I was very very sick and antibiotics did not seem to help. After one treatment I am already feeling better although my Dr says I will need at least 3 more to get me back to a normal level and then periodic infusions thereafter. My Dr views Cll and SSL as the same disease with its expression in different organs of the body. If you get sick and your Dr doesn't think of it, have your hemoglobin levels checked. It can make a huge difference in your quality of life.
Thanks for sharing. I'm sorry you've had a rough go of it these last months and glad to hear things are improving for you. I'm curious what treatment you have had. My hemoglobin levels were normal mid March but I had more bloodwork taken last week. I'll see next week if there's been any change but I doubt. My SLL seems quite content to stay put in my lymph nodes.
It was called Immune Globulin Gammaplex infusion (Intravenous). It has made a huge difference for the better.
Thanks
There is a new subcutaneous version, called SCIG, now funded and used widely in BC and Ontario, you do it yourself at home ...weekly, takes under an hour, watch some TV... do the dishes.. 😜
Because it is weekly, you don't get the immune hills and valleys of the IV type..
Here is one brand there are many more..
hizentra.com/self-administe...
I must know 60 patients on it and they would never go back to the IVIG bar at their hospitals every month... Reduced side effects over IVIG , some localized rashes initially, but they resolve.
~chris 🇨🇦
I’m assuming this involves some sort of port or PICC line?
Yes mine too....let's hope it stays there!🤪
for those following this post I found the following videos in Patient Power to be helpful:
I seemed to get sick every time I flew commercially until I started wearing a mask and using bacterial wipes in my seat, table, buckle, light switch, & chair fabric. I avoid all public door handles/buttons/levers and am very creative in using other body parts to open doors. I get IVIG infusions monthly and have had septic pneumonia three times without any peremptory symptoms of cold/flu/cough/fever. The first time was pneumocystis (fungal) and each time I thought my days were numbered. Otherwise, my WBCs are always within normal limits, and I haven't had any other infections. I just got caught up on my vaccines too.
I see I may have to up my game in terms of germ warfare. I don’t travel really but I work with a lot of people. Nice to know that IVIG is so helpful for people. Thanks for responding.
Wow, excellent discussion. I always wondered why all my numbers were normal except for WBC and I'm still stuck with endless sinus infections among others. I might have to read through this string a few more times.
Hi Scott
Sorry to hear you are sick all th
Sorry....sick all the time!I was just diagnosed the end of July with SLL.I am fatigued now easier than before and blamed it on my MS . SO it's a crap shoot really!I just dont feel like myself these days. My get up and go,got up and left!!!🙄
Oh the fatigue! I think it’s one of the most challenging symptoms. Do you have a CLL specialist Stella? Often non specialists don’t get it and attribute the fatigue to age, or other things.
Yes I have a oncologist, hematologist.....specializes in cll/all
Wont see him for 5 more months
I’m sorry your fatigue is so bad. If it is at the point where you’re struggling to get through your daily routines like personal care and meal prep, I suggest you see if you can get in earlier. I hope you have support. Take care.
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