Advise urgently needed to interpret "bloods" - CLL Support

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Advise urgently needed to interpret "bloods"

OzzieNick profile image
10 Replies

Greetings friends,

I am hoping someone can help me with some advise as I am very concerned about my recent bloods (collected today).

I picked them up today and my lymphs etc have deteriorated a bit but in line with expectations so OK there.... BUT

There is an addendum on my pathology statement that says:

" Electrophoresis has detected an extra band in the gamma region. There appears to be a suppression of normal immunoglobulin production. The band is identified as IgG lambda,

I stupidly did some"Dr Googling" on this and kept getting links to myeloma. This to me suggests secondary cancer and real trouble. The critical number looks to be IgA (under the Immunoglobulins heading which is now 0.37, down from 0.55 18 months ago). Normal range is 0.76-3.89

Can anyone out there decipher this for me before I go nuts? Any advise would be greatly appreciated. I see specialist soon but would really appreciate some info before then.

Thanks, everyone!!

OZ Nick

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10 Replies
MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Are you talking about testing for IgA, IgG, and IgM? It is not uncommon for us to have low numbers because of our compromised immune systems. There isn't anything that can be done for low IgA or IgM - Mine have been low since diagnosis and probably before (2003). My IgG was also very low and is boosted with IVIG infusions monthly, which has kept me basically infection free for all of these years.

OzzieNick profile image
OzzieNick in reply toMsLockYourPosts

Thank you pkenn. Yes it is those 3 . Your situation sounds very encouraging. How bad are the infusions?

Nick

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toOzzieNick

The infusions are not a big deal - my once a month chance to get caught up on computer stuff or whatever. I have no problem with reactions but have found that if you react to one brand just changing to another one usually solves the problem.

You may not need infusions. They are usually started if your IgG is very low and you are dealing with multiple infections or a couple of major infections in a year. I know people with very low IgG who don't have problems with infections and have never had an infusion.

Just an FYI - You might want to "lock" your original post - click on the little v at the bottom and change to community only. It protects your privacy and that of anyone responding to it.

Pat

OzzieNick profile image
OzzieNick in reply toMsLockYourPosts

Thanks so much, Pat.

Very valuable advise on both fronts.

Regards

Nick

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toOzzieNick

There are subcutaneous versions now as well, either done weekly at home or a new monthly SCIG has recently been introduced...

A few tiny needles under the skin and a pump... takes about 20-30 minutes depending on doseage...

OzzieNick profile image
OzzieNick in reply toCllcanada

Thanks so much for that, Cllcanada - I will look into that too.

Good luck with your journey!

Nick

Eagle5327 profile image
Eagle5327

If it's IgA Lambda, not IgG Lambda, my wife has it. When you google the blood value, it comes up consistently as multiple myeloma. Scared the heck out of us. When we got to a specialist, it turned out to be MGUS, (monoclonal gammopathy of undetermined significance). Try looking that up instead. MGUS is a benign condition in that progresses to MM only very rarely, less than 1% per year. This is now a non-issue in our house. Hope your case is as simple!

Geoff

OzzieNick profile image
OzzieNick in reply toEagle5327

Thank you Geoff,

Your words are most encouraging. I'm very pleased it worked out OK for you and will take heart that it may be likewise for me.

I see specialist tomorrow so fingers crossed.

Thanks again!

Nick

SeymourB profile image
SeymourB

I don't think I'd make any leaps based on Dr. Google in this case. Ask Dr. Doctor, instead.

The report phrased it oddly, in my opinion. It mentions an extra band, then talks about something else - the suppression of Ig, which is expected with CLL. Then it talks about a band again, but I notice a trailing comma - as if there were more to the report.

Protein Electrophoresis is one type of PCR, and a lot of the examples seem to mention myeloma as a reason for the doctor ordering the test. But CLL and autoimmune disorders can also be a reason to order it.

I think scientists love saying "Gamma" more than any other greek letter ... I think it has to do with either games or grandmas. The scientists who like to say "Beta" probably gamble or like boxing. ;^)

All antibodies (IgA, IgD, IgE IgG, and IgM) are called Gamma Globulins - the gamma region the test report mentions, I believe. IgG is the most common antibody (immunoglobulin) by far in both normal people and CLL patients. So IgG could be said to be a gamma gammaglobulin. But, gawd, I hope they don't! It's confusing enough that they there's so many alphas and betas in the immune cells, that even scientists get confused.

As far as the lambda goes, individual antibodies have either a kappa or a lambda light chain, but not both. This is one of several ways that antibodies shuffle genes during B-cell and T-cell development to be able to match whatever is attacking the body. It's usually illustrated with little boxes on a string:

en.wikipedia.org/wiki/V(D)J...

I think that's pretty cool! When people casually say "every cell in your body has the same genes and DNA" it's a lie! Your B-Cells and some T-cells have been shuffled a bit, and your red cells have no DNA at all (no nucleus).

Usually, with CLL, the electrophoresis identifies that your B-cells either have kappa or lambda light chains in the mutated cells. It doesn't mean much by itself. It's a way of telling the other doctors what your variety looks like.

When I googled extra band PCR, I got links from puzzled biologists trying to figure out what they did wrong in preparing the PCR. Google can give you any answer you want ... or not.

OzzieNick profile image
OzzieNick

Thank you, SB.

Your post is really informative and useful - particularly your reassurances.

I will look closely at the link you provided.

I have just returned from the specialist and he seems to think that while my immune system has weakened somewhat, I am still a little a fairway from panic stations or even treatment.

For that I am very grateful!

Thanks so much for your help

Regards

Nick

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