Some ideas please : Hello again, I have... - CLL Support

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Some ideas please

Annieareyouok
Annieareyouok

Hello again, I have transferred to the Marsden, I was told at my local hospital of my CLL

I have received “copying of letters” but flummoxed 😶 don’t understand what a immunoglobulin gene mutation status is? Also immunophenotyping? Tried looking it up, but not sure familiar with this.

Also the doctor recommended prevnar against puenmococcus and haemophilia-B/Menigococcal vaccination. He wants my GP to arrange this. He is a CLL doctor. If you can throw any light on the above, I would be very grateful

Thanks 😊

7 Replies
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Hidden
Hidden

Immunoglobolin refers the IgHV gene/protein and if it is mutated or not. I'm not actually sure if it is the gene(s) themselves that get mutated or just the proteins and heavy chain molecules they make...I am guessing both. But either way it is better to have a mutated IgHV status. If you are 13q Deleted (from FISH test) and IgHV mutated (usually from Flow Cytometry showing negative CD38 and ZAP70) you are considered to have a less agressive form of CLL

AussieNeil
AussieNeilAdministrator
in reply to Hidden

Hi Annie,

I'm pleased to see you getting much better management in your new hospital from a switched on CLL specialist. Getting up to date on our non-live vaccinations is very important when we have CLL, because we are far more susceptible to infections which may become fatal. Vaccinations tend to work better before our CLL becomes advanced and while we are younger. This post explains what you need to do: healthunlocked.com/cllsuppo...

Further to Scott's reply (and more in answer to Scott), B-lymphocytes go through what's termed a hypermutation process, which is a very clever way of modifying the DNA in the IgVH gene we inherit from our parents so we can fight off thousands of different illnesses and importantly, not succumb to them a second time. Our B-lymphocytes make B Cell Receptors (BCR) incorporating immunoglobulins which are uniquely keyed to different antigens (proteins on the surface of pathogens). When a BCR is stimulated by the immunoglobulin in it locking with its antigen, (i.e. when we are fighting an infection) it stimulates the B-lymphocyte to divide. That's why our lymph nodes swell when we are ill - from the rapidly duplicating B-lymphocytes. They then mature into plasma cells, which churn out immunoglobulins (IgG, IgA,IgM), which mark the pathogens for destruction by our immune system. Some hang around in our nodes for decades as memory cells, with their BCRs just waiting to be stimulated again. That's why we generally only get measles, mumps, chicken pox, etc once and why vaccinations work.

If we have CLL with the mutated IgHV gene, the CLL developed later in the B-lymphocyte lifecycle, which means it is a more chronic illness than if it developed earlier. If you are IgVH mutated, you are more likely to have a longer time until needing treatment and longer remissions, plus you do much better on the old chemoimmunotherapy treatments like FCR and BR.

Neil

Hidden
Hidden
in reply to AussieNeil

Neil,

I didn't know this

"If we have CLL with the mutated IgHV gene, the CLL developed later in the B-lymphocyte lifecycle,"

I thought the CIA just shot us with a CLL gun, then right off shot us with an IgHV gun....or maybe it is aliens.....either way, I thought both happened at the same time.

Oh, Renee showed me the latest tin foil hat theory this morning....and apparently Australia does not exist...cause the world is flat...and all the airline pilots and people who live in Australia are just part of the hoax. So Renee wanted to tell you, we are on to you....

I mean, ok, I am a little nuts...but these guys are getting way off the reservation with this flatearth stuff....I mean sure, some tiny tiny chance exists and maybe it is flat...but I am pretty sure even if it is flat....Australia still exists. I mean common, you expect me to believe millions of people are all keeping the same secret?????

Australia does exists, right Neil? I mean you are not in on any hoax, right?

Scott

AussieNeil
AussieNeilAdministrator
in reply to Hidden

Here's the true conspiracy (sorry Annie): flourish.org/upsidedownmap/

Hidden
Hidden
in reply to AussieNeil

So all you guys claiming to be from "down under" is the real hoax? You are from Up Top? Did I understand correctly?

YelvertonDevon
YelvertonDevon
in reply to Hidden

Actually it’s New Zealand that does not exist

theguardian.com/world/video...

Hidden
Hidden
in reply to YelvertonDevon

I can't wait to show this to Renee!!! Thank you!!

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