trisomy 12 dx with cll

[Pokerplayer1]

cll and trisomy 12. Any information will help alleviate fears

[Shepherd777]

Take a deep breath and relax there are many meds available that address Trisomy 12. It may not be curable YET, but it is certainly treatable just like diabetes.

As we say often, you will probably die with CLL, but not from it. Those better able to address this will share the drugs like Imbruvica, Calquence, and Venetoclax that have worked well for them.

[Pokerplayer1 in reply to Shepherd777]

Thank you. Seeing a specialist soon cll since 2017 but they just discovered trisomy 12. I was told low risk but now radiologist states intermediate. You are so right google then didn’t help my fears. How do you lock posts and what’s the advantage to do so? ❤️

[SofiaDeo in reply to Pokerplayer1]

A radiologist is not a CLL specialist. Could you have misinterpreted the radiologist comments as related to *staging* and not *risk*? Staging in CLL doesn't necessarily correlate with prognosis/outcomes like it does in other cancers. But a radiologist could see the scans, have access to the bloodwork, and easily comment on what Stage your CLL is. You & I could do if we had that data, it's a simple calculation.

The most recent data I could find on Trisomy 12 (2018) says the *prognosis* is intermediate. I bet that's what the radiologist read, too

[BobbyFour in reply to SofiaDeo]

It was Sofia who calmed me down last time! I have learned not to panic at the reports, or at least am trying to learn not to 😀. My 11q report said ‘High Risk’ and ‘poor prognosis’. However, a paper came out the year after the lab reference and concluded that their province’s 11q patients treated before FCR, and long before the targeted therapy, lived and average of almost 15 years from first treatment. Then I found another paper suggesting that my lower 11q numbers (21% in my one lymph node, none in my marrow) is better than high numbers. Basically, the lab prognosis statements are meaningless.

[SofiaDeo in reply to BobbyFour]

There are soooo many nuances to the various parameters. Look at me, I have the dreaded 17p deletion. And complex karyotype. But it seems that I have it on only 1 allele of my CLL cells, so I do seem to have some ability to make at least some of those apoptosis proteins. Plus my percentage is low, and I have mutated IVGH. (I am searching for my original test from 2011, because I swear I was told originally it was unmutated. I remember thinking "since everything else is mutated, why couldn't this be mutated also?" since mutated appears to be beneficial)

Which may help explain why I am still around against everyone's initial expectations. IMO the staging tells the docs what may or may not be an immediate problem, and what areas may need watching more closely. I agree "prognosis" has little relevance, until new studies utilizing patients on the newer agents are published. I was Stage 0 at diagnosis, but told the doc he had Carte Blanche to do anything & everything. I felt really really awful, had other symptoms even though labs were fine except for lympocytes and suspected things weren't as innocent as that Stage 0 seemed to imply. I agreed to an early bone marrow biopsy, which in my case showed almost complete infiltration! RBC's, platelets, and neuts were normal but I thought when that CLL took my marrow over 100% I would be in trouble. So I looked at treating sooner rather than later.

But there are many here who initially presented with Stage 2 or 3, and various "poor prognostic indicators" but spent years in W&W. So take it all with a grain of salt, think of it more as a description than what the outcome will be.

[Pokerplayer1 in reply to SofiaDeo]

Thank you

[Pokerplayer1 in reply to BobbyFour]

Thank you!

[Pokerplayer1 in reply to SofiaDeo]

Thank you I think it must have been staging. Will se specialist soon Appreciate response!

[Shepherd777]

Also, stay away from Google it is 5 to ten years behind what is really happening in the CLL community. In addition, you will get more responses and quicker if you lock your posts.

[Pokerplayer1 in reply to Shepherd777]

Thank you

[gardening-girl]

Hello Miss Pokerplayer1, I am delighted to relate to you that I'm trisomy 12 and am in my 25th year post-CLL diagnosis. 😊

[BobbyFour in reply to gardening-girl]

And you had your first treatment not long after diagnosis - so I am holding you up as what I want to achieve! Even 20 years would be sweet!!

[Pokerplayer1 in reply to gardening-girl]

Thank you!

[Pokerplayer1]

Thanks so much! Seeing a specialist soon cll since 2017 just tested for the abnormality and told I have trisomy 12 . Your post helps❤️

[BobbyFour]

I have radiology reports on my CLL which range from moderate risk to high risk, and I panicked too. Until my brain settled down and my forum friends here pointed out those are old descriptors which don’t mean much in the new treatment world. And even less in the treatments that will come out in the next 10 years!

[SofiaDeo]

Locking your posts means only us in this group can see it, otherwise everyone on the Internet can. It's at the very bottom of a post, where it says "share" When you answer "everyone" that means the entire internet. We can tell because there will be a little lock symbol next to the title. The default setting is "everyone" on the internet so it's something you have to watch out for and change.

Setting that "locks" a post to the CLL group

[country76]

I am a Trisomy 12, bright cd20, and mutated. I have had it a long time maybe since the 90s. I was diagnosed 2012 at WBC 25-30's during a routine physical. My hematologist said it could go either way. Never need treatment or eventually need treatment. I saw a cll specialist who said I had it a long time. Looking at lab work from 2005 WBC was just over the border. 2012 I began my watch and wait journey.

My doubling time turned out to be around 7 years. 2019 I started treatment due to an enlarged spleen and catching Legionnaires disease. So considering starting in the '90s and treatment 2019, I have had it a long time.

It never slowed me down until I became sick. Alacabrutinib snapped me out of it. I am looking forward to no drugs.

Hope this has eased your mind a bit. It is a very frightful diagnosis to hear and the first year is the most stressful. Congratulations on finding this website, you aren't alone and most of your questions can be answered here. Eat healthily and exercise. May you have a long watch and wait and never require treatment.

[Pokerplayer1 in reply to country76]

Thank you 😊

[Pokerplayer1]

Thank you so much appreciate your response!

[GLB55]

Hi there Pokerplayer1I too am trisomy 12 and mutated. Diagnosed in 2014 but suspect I've had CLL since 2010 looking back at routine bloodwork. I needed treatment in 2016 and was given 3 options. I chose FCR because of what I learned from this site, trisomy 12 responds very well to FCR. My Dr was impressed with the knowledge I used in basing my decision and wondered where I learned what I had learned. I told him about this site and he now recommends this site to his patients. Some of the options we have now weren't even available in 2016! That's how fast the medical world is moving in the research on this disease.

I only needed 2 rounds of FCR to achieve MRD negative and my blood counts are perfectly normal to this day, knock on wood. I now only see my CLL Dr once a year. Don't get me wrong, the FCR treatments not only walloped the CLL but myself as well. Both rounds put me in the hospital for a day. I continued with 4 more rounds of Rituxan (the R of FCR). I still feel I was one of the lucky ones and wouldn't change anything about the path I chose. Good luck on your journey. If you ever do need treatment there are so many great options today.

Like my Dr said and many here have said.....

"You will most likely die with CLL, not from CLL"

Take care

Gary

[Pokerplayer1 in reply to GLB55]

Thank you appreciate the information greatly