Infection risk and SLL: The recent post on... - CLL Support

CLL Support
13,756 members21,608 posts

Infection risk and SLL

Jemorgen
Jemorgen
46 Replies

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 🇨🇦

46 Replies
oldestnewest
Cllcanada
CllcanadaTop Poster CURE Hero

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 🇨🇦

3 likes
Reply
Jemorgen
Jemorgen
in reply to Cllcanada

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.

Reply
Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Jemorgen

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 🇨🇦

3 likes
Reply
Jemorgen
Jemorgen
in reply to Cllcanada

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.

1 like
Reply
Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Jemorgen

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 🇨🇦

4 likes
Reply
Scottxxoo

Heather,

SLL and CLL are basically the exact same disease, caused by the same genetic defects, and mostly treated the exact same way. It is like two nice new Dodge RAM 2500 trucks....except one is blue and the other is red. They just look different.

SLL presents mostly in the lymph nodes, the spleen, and blood test results can be 100% normal. In CLL the lymph nodes and spleen are usually not effected but blood test results can be radically wack-a-doo.

One of the big concerns is if the Absolute Neutrophils become very low (shows on Complete Blood Count with Dif test...you have had at least one and probably tons). These are the soldiers of the immune system and fight off invaders. Platelets can also get low and these work to clot the blood...so if yours are low, a bleeding can be a concern.

People talk about being immune compromised....and no doubt all of us with CLL/SLL are...but I never radically changed how I live in terms of being a germ-a-phobe...there are just so many germs around (heck 30% of YOU is not really YOU...but wiggly things best not thought about). Yes I wash my hands a lot more frequently, yes I wear gloves when I change my rotten cats litter box.....but yes, my cat still sleeps next to my head sometimes, I stack wood when able with only regular work gloves on....

So much of what makes you feel good is entirely up to you.

Scott USA/Maine

6 likes
Reply
Jemorgen

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” 😜

2 likes
Reply
Scottxxoo
Scottxxoo
in reply to Jemorgen

Some one else will have to answer this....for sure we still immune-o-compromised.... but honestly, I can't get my head around why, if all your blood test results are fine... AussieNeil is the only one I can think of who might be able to give a good answer to that.

Reply
AussieNeil
AussieNeilAdministrator
in reply to Scottxxoo

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

3 likes
Reply
Cllcanada
CllcanadaTop Poster CURE Hero
in reply to AussieNeil

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 🇨🇦

3 likes
Reply
Benlewis
Benlewis
in reply to Cllcanada

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.

1 like
Reply
livinglifewell

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.

Reply
Jemorgen

😱 eek Really?

Reply
Scottxxoo

Right...the crappy cytokines...I been whining about those for two years...as they are the culprit causing the fatigue. I always feel sick...somewhere between a bad cold and Ebola....but I don't think I am sick....just a wack-a-doo immune response.

5 likes
Reply
Stelladoro

Hi Scott

Sorry to hear you are sick all th

Reply
Stelladoro

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!!!🙄

Reply
Jemorgen
Jemorgen
in reply to Stelladoro

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.

Reply
Stelladoro
Stelladoro
in reply to Jemorgen

Yes I have a oncologist, hematologist.....specializes in cll/all

Wont see him for 5 more months

Reply
Jemorgen
Jemorgen
in reply to Stelladoro

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.

Reply
Stelladoro
Stelladoro
in reply to Jemorgen

Hi

My hubby is extremely helpful!thank goodness!

1 like
Reply
Jemorgen
Jemorgen
in reply to AussieNeil

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.

Reply
AussieNeil
AussieNeilAdministrator
in reply to Jemorgen

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

Reply
Jemorgen
Jemorgen
in reply to AussieNeil

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

Reply
AussieNeil
AussieNeilAdministrator
in reply to Jemorgen

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:

lymphomation.org/type-CLL.htm

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

Reply
Jemorgen
Jemorgen
in reply to AussieNeil

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.

1 like
Reply
Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Jemorgen

Until Neil wakes up this Aussie website has a good brief overview...

leukaemia.org.au/disease-in...

Reply
Jemorgen
Jemorgen
in reply to Cllcanada

Ill check it out. Thanks

Reply
MsLockYourPosts

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.

4 likes
Reply
Jemorgen

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.

Reply
MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Jemorgen

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.

1 like
Reply
Jemorgen

Good advice. Thanks. Can I (with SLL) assume that all my bad lymphocytes will flood into my blood as happens with people with CLL?

Reply
Stelladoro

I agree. Dont think it necessary to wear a MAsk when flying! 😷 anyone else with a comment about that?

Reply
Jemorgen

Thanks I’ll keep trying

Reply
lelliottaeten

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.

2 likes
Reply
Jemorgen

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.

Reply
lelliottaeten

It was called Immune Globulin Gammaplex infusion (Intravenous). It has made a huge difference for the better.

1 like
Reply
Jemorgen

Thanks

Reply
Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Jemorgen

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 🇨🇦

1 like
Reply
Jemorgen
Jemorgen
in reply to Cllcanada

I’m assuming this involves some sort of port or PICC line?

Reply
Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Jemorgen

No.. very fine needles you place under the skin... there is training at first, then its DIY.. no big deal, hardly feel them...

~chris 🇨🇦

1 like
Reply
Jemorgen
Jemorgen
in reply to Cllcanada

Oy vey. Ok I can do that if it comes to it. Thanks

Reply
Stelladoro
Stelladoro
in reply to Jemorgen

Yes mine too....let's hope it stays there!🤪

Reply
Jemorgen

for those following this post I found the following videos in Patient Power to be helpful:

patientpower.info/video/inf...

patientpower.info/video/wha...

1 like
Reply
livinglifewell

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.

1 like
Reply
Jemorgen

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.

Reply
GrapeGrower1

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.

2 likes
Reply

You may also like...