Unmutated IGHV: Morning all, just completed D... - CLL Support

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Unmutated IGHV

Jim-Boy profile image
8 Replies

Morning all,

just completed D15 on cycle 1 on V & O few Bumps in the road, but getting through well pretty well,

I have been looking back on recent comms from my Dr who advised on letter I have Unmutated IGHV: IGHV3-48*03, 100% germline homology, I haven’t discussed yet as now between Drs as current one has moved on, also on the letter not but discussed is splenomegaly with infarct, I could do the Google thing but if anyone has any advice on these it would be appreciated,

On the whole we are seeing some very good results thus far from the treatment

thanks all

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Jim-Boy profile image
Jim-Boy
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8 Replies
Zweistein profile image
Zweistein

IGHV3-48*03 is decoded as follows:

Locus: IGH

Gene type: V (variable)

Subgroup: 3

Gene position: 48

Allele (variant): 03

This is the gene within the IGHV region that is actually used in your CLL cells.

And 100% germline means that there is no difference/mutation in comparison to your normal genes.

imgt.org/IMGTScientificChar...

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

Jim-Boy profile image
Jim-Boy in reply toZweistein

Thankyou, for my simple mind, your last point as being there is no difference/mutation can I take that as a good thing?

Skyshark profile image
Skyshark in reply toJim-Boy

Unfortunately no, IgHV unmutated is an indicator for earlier need for treatment, a rapid and good response to treatment with novel drugs but also earlier progression and need for re-treatment.

Jim-Boy profile image
Jim-Boy in reply toSkyshark

thanks

Zweistein profile image
Zweistein in reply toJim-Boy

The so-called somatic hypermutation of IGHV is part of the healthy maturation process of B lymphocytes. Immature B lymphocytes with unmutated IGHV as CLL cells are considered to be more dynamic in their development. In the light of new therapies, the IGHV mutation status is regarded as less important than formerly.

BigfootT profile image
BigfootT

Jim-Boy, This may help. If you look at the chart in the upper right. 3-48 has an incidence of about 0.8% of Unmutated. Fairly rare. I have a rare unmutated finding as well. My specialist couldn't draw any conclusions or prognostics from it. The concerning finding is 4-39 which tends to have a higher incidence of Richters in unmutated, Trisomy12 patients. I believe they call that Subset 8 patients. Thankfully you don't have that!ashpublications.org/view-la...

Bigfoot

Jim-Boy profile image
Jim-Boy in reply toBigfootT

Thanks for insight, much appreciated

Spark_Plug profile image
Spark_Plug

I was told When I asked about my unmutated status, "It just means you won't have chemo".

Keep in mind some of the conflicting answers are because not all locations treat the same way. The U. S. is more relaxed to use newer drugs, other countries may still use chemo as a first required treatment before they will go to another therapy. So, it follows that if chemo does not preform well with some types of CLL it may be reflected in what a doctor mentions as your prognosis. The boundaries are being refined as to how treatment will turn out.

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