Trisomy 12

[mjcll41]

That's the name of my specific mutation. (No superpowers, darn) Anyone else have that? Anyone know what difference it makes? My hem/on said that it was less dangerous than the others, but I'm just wondering what symptoms or experiences I may have in common with other Trisomy 12s.

[lankisterguy Volunteer]

Hi mjcll41,

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I am also Trisomy 12 (also UnMutated).

Since you have already experienced progression to treatment and have been taking Ibrutinib/Imbruvica you probably have a good sense of how fast your own CLL will progress and how well you are responding to treatment.

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The prognostic factors (like Trisomy 12) are sometimes used to forecast those data points for newly diagnosed patients, until they get their own specific history, as you have already. So I would submit that knowing you are Trisomy 12 does not provide much, if any, added information for you.

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If you want to read further, please look for the box labeled "Related Posts" on this page (upper right column on computer screens, scroll way below on mobile devices) to find a list of previous posts like this:

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Related Posts

*Trisomy 12 mutated igvh

*trisomy good or bad?

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*Just Diagnosed with CLL-Trisomy 12

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Len

[CLLCalifornia-USA]

I too am Trisomy 12, unmutated. Treated soon after diagnosis. I’ve had FR, BR and now Ibrutinib. I’m doing well on Ibrutinib and feel fantastic. Wishing you the best. Sally

[Jemorgen]

I’m trisomy 12 and “likely unmutated.” All my CLL is in my lymph nodes making me SLL. Most of my “bad” nodes are located in my mysentery (midsection) with bulky disease crowding out my major organs. Today I started my second cycle of BR. My bloodwork on Sunday showed everything in the normal range (typical of SLL).

[mickimauser11]

I had Trisomy12 unmutated was in a trial IbrutinibVenetoclax and Obinutuzumab cancerfree sinceJanuary2018

[virdieblue]

Me too. You should ask your doctor to test you for Notch 1. Some Tri 12s (like me) have that marker. It is potentially a more negative indicator.

Having said that, I have been on Ibrutinib for 3 years and am doing good. Minor side effects only-

Virginia

[Sundancer316]

Also Trisomy12. Lymph node involvement diagnosed by biopsy after swollen neck lymph nodes. My hematologist said they don’t test for mutations as treatment is the same for those my age. Still on wait and watch-2 years. Blood work is stable

[GLB55]

I’m Trisomy 12 also, treated with FCR in 2016. Achieved MRD negative and blood work is still spot on. No lingering side effects. Crossing my fingers and hoping for a long remission.

[JustAGuy]

I am also part of the club. Probably unmutated. Diagnosed 3.5 years ago, still untreated and on watch and wait. T12 is not the worst marker, nor is it considered the best. But advances in treatment in the last 5 years or so is making some of the differences less.

[F550]

I am tri 12. When I was diagnosed with SLL in 2017 and put on W & W the median survival post dx was 9.5 years. (This was before ibrutinib was as commonly used as it is today.} At 79 this was not a bad prognosis. None of the males in my family that I know of made it past 87. I started treatment with ibrutinib in January of this year. It has eliminate all the palpable nodes. I had a reaction to alopurinol at the beginning of treatment, mount sensitivity for the first month, and hypertension after a few months. This was controlled with 2.5 mg. of amlodipine until I had an episode of tachycardia. My BP is still good now despite stopping the amlodipine. Other side effects may be due to aging rather than the ibrutinib.

Good luck,

Mike

[Ginajetta in reply to F550]

I too am trisomy 12+, CD38 and unmated. I was on watch and wait almost 12 years. Thanks to Dr Kanti Rai he recommended watch and wait as long as i can as other doctors wanted to start treatment in 2011. He said new drugs coming down pipeline let’s try to wait. Started treatment with imbruvica 280mg September 2018.

[Smakwater]

mjcll41,

I wonder what your hem/on actually means by "less dangerous".

JM

[mjcll41 in reply to Smakwater]

better prognosis, longer lifespan.

[Smakwater in reply to mjcll41]

Interesting,

In general terms with some medical professionals, this seems to be the introductory short version of predictive prognosis. I was given a similar initial introduction to the welcome of acquiring "The Good Cancer".

Trisomy 12 being your primary predictor, yet not knowing your mutational status nor any other underlying influences, I am not sure the Dr's statement is comparatively fulfilled. E.G, CD20/CD38/CD5, ATM etc...

Prognostics and predictive factors are not solely chromosomal abnormalities. Such can be substantiated in part through the publications of Dr. John Byrd, 2014, "Abeloff's Clinical Oncolgy" with regard to disease progression and Richter's transformation.

Not intended to insight a worrisome perspective, but rather to encourage continuance for an accurately measured best case outcome. Individually there can be and should be much more to the on going observation/analysis.

If you are interested here is a link to another supplemental publication on the same subject.

jamanetwork.com/journals/ja....

I wish you the very best outcome with your treatment choices.

JM

[Fowey2009]

My husband has Trisomy 12. We were told that Tri 12 responds well to FCR which he did and achieved MRD -ve in 2015. However numbers started to move out of normal range earlier this year and he is starting venetoclax in September.

All the best

Beryl