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CLL Support Association
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Any significance with IgVH testing?

I am wondering what the significance of the IgVH testing means? Is this an important test to have before the beginning of treatment?

Im assuming it's not and it is only done for research purposes but it is very unclear to me

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This might help you...it is pretty significant.

patientpower.info/video/ask...

cll-nhl.com/2014/04/mutated...

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Importantly:

1) IgVH mutation status a strong indicator of how long you'll go before treatment as well as your life expectancy with CLL

2) Unlike other prognostic indicators, it shouldn't* change over time, so if you really want to know your likely path with CLL, you can have this test well before treatment, whereas other prognostic tests are best done just before commencing treatment.

*IgVH testing is complex to perform and the difficulty of doing it correctly is thought to be the primary reason that some of us report different results.

Neil

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I've had the igg and others included that were Immunological tests. Are they the same? It took a week to get the results and came back that my immune system is low and the Dr. said I'd probably be prone to more infections. How often do they do this type of test? I generally just have CBC with diff every other month.......is that enough? What can be done about a low immune system? Anything I can do for myself to increase that? Thanks AussieNeil.

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IgA, IgG and IgM testing is a measure of your immunoglobulin/antibody production. This tends to fall over time with CLL, because the CLL cells interfere with the normal B and T cell interaction required to produce B cells specific to a given antigen, which normally would mature into plasma cells, our immunoglobulin factories. If your IgG falls below 4/400 (limit depends on county) and you are having sufficiently frequent/hospital admitting infections, then your specialist should start you on IgG infusions to boost your immunity.

IgA, IgG and IgM testing frequency is determined by your levels and may only need to be done every few years early in your diagnosis.

This is not the same as IgVH testing, but is related. The IgHV gene 'mutates' or becomes rearranged in order to generate unique B Cell Receptors specific to a given antigen, so is a measure of the maturity of the CLL cell. Later maturity, that is positive mutation status is a good prognostic factor, correlating with longer survival.

To improve your immune system, there's not much you can do other than looking after your health and diet. There's inconclusive evidence on whether supplements can boost your immune system and some may boost your CLL growth. I've also personally seen supplements impact my liver health, so have had to accept my specialist's advice to avoid them.

Neil

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THANK YOU!! You explained it much better than my doctor did. He did mention IgG if I had frequent infections. I do get infections, mostly ear and throat, but are taken care of with antibiotics at home, nothing requiring a hospitalization. I didn't think there was anything I could do to boost my immunity, so I haven't tried anything. What supplements impacted your liver health, if you don't mind the question? I want to make sure I'm not taking it. You know, you could work in a Doctor's office explaining these things to patients and make a lot of money!! Thanks again.

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I was taking over the counter supplements which claimed to boost immunity (I was very concerned about my neutropenia), in addition to a high dose of green tea capsules. I dropped back on the green tea and stopped the other supplements. I've since taken a much higher dose of green tea since (different supplier who also supplies a laboratory analysis report) with little change in my liver function test results, so either it was the different green tea supplier or more likely the other supplements that were doing the damage.

Frankly, the supplement industry is rife with inferior products sold on the basis of unsupported claims of efficacy and with poor adherence to the claimed ingredients. Until there's far greater government oversight, individuals need to be very, very careful about what supplement they take and be aware of interactions with other medications. At least one bonus of having CLL is that we can use our blood test results to monitor for any adverse effects - either ourselves through self education, or by informing our medical team and asking them to monitor our health for us. I do both.

Neil

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Tell us more. How mainstream were these over the counter products and what did they contain?

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They were mainstream alternative/complementary products readily available from Australian health stores and pharmacies and Australia has close to the best regulatory framework for minimising the risk to consumers of these products. I didn't try the products individually to find which was responsible and it could have been the combination.

It took about a year for my ALT result and about 6 months for my AST result to return to my long term averages, but most of the recovery occurred within a month.

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Very interesting. I agree with you about lack of practical regulation. UK is supposed to be pretty tight but I review for Amazon and have been asked to review products that our food regulator specifically say are not authorised for sale as food supplements!

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Thank you. My liver enzymes are on the high end of normal range and the Dr. doesn't know why and neither do I. Jumped up within the last 4 months, and I'm doing nothing different. It bothers me and I'd like to bring the reading down if I can, but I don't know how, or what I could take to do that. He just said the usual, we'll watch it. Since most doctors aren't trained at all in herbals they have no idea about them, and there is no online drug/herbal interaction check that's any good.

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Try an Internet search for the main ingredients of any drugs/supplements/herbal remedies along with 'liver damage' and first cut back on supplements/herbal remedies where there's significant concern obvious in search results. See if your liver health (ALP, ALT, AST blood test results) improve after a month or more before restarting them. Naturally don't do this with prescribed drugs, but if you do find significant concern for any of them, ask your doctor if there's an alternative drug you can try.

Naturally, this will only work if the manufacturer (or their supplier) is truthful about what's being provided. The following posts show that sadly, we can't trust some suppliers...

New York Attorney General accuses major retailers of selling contaminated/substituted products

healthunlocked.com/cllsuppo...

Supplements and Safety

healthunlocked.com/cllsuppo...

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I may have discovered what is causing my high normal liver enzymes. With Imbruvica I can't take any anti-inflammatory drugs, so for pain of any kind I am only allowed Tylenol. Well, according to the Mayo Clinic website, high liver enzymes can be caused by Tylenol. Since I never took Tylenol before this, never did much good for pain, and I have been taking it for a while now, I'd bet that's what's causing it. Guess I'll have to stop taking Tylenol, and see if my next test improves. But have no idea what to take now for pain. I don't want to take Tramadol every day. I don't need a prescription pain reliever for most pain. It's very confusing!

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I was not getting infections requiring hospitalizations, but my IgG was at @250, and I was living from infection to infection. Antibiotics did not help, so I was started on IVIG infusions.

Check about interactions of any prescription drugs with the liver. My cardiologist has me on a new med, and ordered liver function tests, which he said are the norm for anyone on this drug.

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IgVH is an important prognostic factor, but its predictive power is by far strongest in predicting that those who are mutated will do well with FCR as long as they have no other bad marker.

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How many years of remission would you class as doing well with FCR. Can you then assume you are mutated?

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A significant percentage of mutated patients with no adverse markers are more that 12 years old after FCR with no sign of relapse. Others are less lucky. We have more details of the studies on the website: CLLSociety.org Only way to tell your nutation status is to have the test at a reliable lab. Odds are good if you have a durable response to FRC that you are mutated, but it is far from certain as a few unmutated patients also do very well with it, so I wouldn't assume.

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Thanks for your comments regarding IgVH. My doctor did not share my status with me prior to presenting me with treatment options and me commencing treatment. I was DX in 1/17 and began treatment 2/17 so at this point I am still unaware of my status. When I questioned my dr regarding this I was told it had not come back from lab. Now I'm being told it is being tested now and will come back by my next appointment in one month.

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I will note though that I found out I was Trisomy 12 and 13q deleted prior to treatment. My dr added results a few days ago from prior tests that said I am also BIRC3 but that's test from January and I was not aware of that until this week.

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Clinically every patient has a flow cytometry and CD38 and to a lesser extent Zap 70 are surrogate indicators fot IGHV mutation... and they have been used for about 15 years and 8 years respectively.

The problems are...

They are only 70% accurate

CD38 can change over time, but never goes from mutated to unmutated

Zap70 is not a great test and is prone to lab errors and handling problems.

Sometimes in discordant patients CD38, ZAP70 and direct IGHV mutation status do not agree...

IGHV direct mutation status is beginning to gain a treatment path significance, but outside the U.S. the surrogates are still the norm, but this might change if the lab expertise increases and cost come down...

But for most of us CD38 and ZAP70 will be the clinical norm...

Please note:

The gene is now called IGHV and the gene family is IGHV@

Sample test

cancergenetics.com/wp-conte...

~chris

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I just wanted to follow up on this topic to say I live in the US and have had the IgVH Somatic Hypermutation test. The labs were drawn at my doctor's office and sent to the Mayo Clinic. Took about three weeks to get results. My doctor explained the difference between mutated (good) vs. unmutated (not good) so naturally I was hoping to find I had mutated genes. When I received the results I was ecstatic to read I had 5.4% mutated genes. But then the report went on to say the allele was from the VH3-21 gene which "regardless of mutation status has relatively adverse effects." I followed up with my doctor and he confirmed that having this gene usually means a shorter time to treatment and shorter remission times. It is viewed as having the same results as having an unmutated gene. I'm still in W&W so I'm truly not worried about my future. I say all this to say that this test does have some exceptions. It is one, if not the best, indicator of prognosis. But with all the research going into CLL I am confident there will be even more choices of treatment in the near future. This is great news for everyone, regardless of mutation or gene family results.

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Hi Katiedee1625,

As a fellow VH3-21 user, I learned that is is not always bad. These Europeans have determined that VH3-21 patients can be grouped into subset #2 and non-subset #2.

ncbi.nlm.nih.gov/pmc/articl...

If you can get your IG sequences from Mayo Clinic and paste them into this tool, you can find out if you are subset #2 or not:

tools.bat.infspire.org/arre...

Since about 1/3 of us CLL patients fall into subsets, it would be great if all IGHV mutation testers were required to report our actual sequences (or at least if we fall into a subset).

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I love this forum! Always learning something new from others. I will follow up on this for sure. I think an easier route is for me to just ask my doctor. Surely he would know or would at least find out. A little surprised he didn't mention it and the Mayo Clinic didn't either. He's a part of a very large research institute. But I'm anxious to find out.

Thanks again!

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