Trisomy 12

[Jemisavs5]

Trisomy 12, wait and watch here. Stage 1 as per my doctor Dr Rai.  Diagnosed July 2015 .  Large lymph node on neck and all over. Fatigue at times . I Ran a half marathon last April and unable to run now but I keep trying. 52 years old, mother of four.  I would love to hear from others with trisomy 12.  Trying to stay positive and wish I could shrink my lymph nodes and improve my quality of life.  

Dx 7/2015

Trisomy 12 

IGHV mutation no evidence of deletion ATM or 13q14

Abnormal Karotype 47XX, +12(18),  46XX (2)

Negative for SF3B1 mutation

Negative for TP53 mutation

Negative for NOTCH1 mutation

Zap 70 --, CD38 --,

As of 2/16

Lymph % 54.9%

Lymph # 8.04

WBC 14.6

Platelets 344

[vlada]

Hello, 

I am 37 years old. I have Trisomy 12, IGHV mutated. W&W for three years now. I have also lymph nodes enlarged all over. I  drink Green tea extract (6 tablets), running macrobiotic diet  (with some bone soupes for my B12). I had vactinations this year (for sesonal fly also - non live vaccines) work full time job and have some extra activities and so far I didnt have to much problems. I have two  children under age of 7 and a lot of activities around them. Personaly I think that We need to use every possibility to suppres B cells to overexpress themselfs. Green tea is as I have seen in many scientific articles good in stoping some Bcl2 activities responsible for Our problems...It is good for Our fatique as well. Now I am looking for some issues regarding low endorfin in people with leukemia. I am using LDN for that for some time now...I think that from the same reasons extracise is good for us (it promote endorfin production...).

[Name-1 in reply to vlada]

Which firme tabl.Green tea extract?

[AussieNeil Partner Administrator in reply to Name-1]

Olga, you shouldn't take green tea capsules while you are being treated

Neil

[Name-1 in reply to AussieNeil]

I know.I asc but I am not use nothing,only D3 1x in week.I wait what will be my next therapy.I have large nodes and Chlorambucil ex.Haematologist say Endoxan+Prednisolon.Ciclophoshamid (Endoxan) is ,too,alkil groupe !I see ,maybe Rituxan with Chlorambucil.LDH is 647!       Thank You Neil.

[AussieNeil Partner Administrator in reply to Name-1]

Please do not take green tea capsules without informing your doctor:

healthunlocked.com/cllsuppo...

[Name-1 in reply to AussieNeil]

I understand.I dont use EPCG.

[Fowey2009]

Hello

My husband has trisomy 12 (and drinks loads of green tea).  if you ever need treatment - and hopefully you won't - it is known to respond well to FCR

After FCR last year, husband now in complete remission (MRD negative) - loads more energy and working hard

(He was 56 when diagnosed)

All the best

Beryl

[Mijoed]

Hi, 

13q and Trisomy12 and on w&w. First indications of CLL at 47 (now 56). Slightly swollen lymph nodes in neck, armpits, groin and chest. Swollen spleen was removed after an RTA, just as the hematologist was talking about removing it anyway. I cycle for about 150 miles a week & walk the dog for 6-10 miles daily. I dont consider myself as suffering from fatigue but I do find that I now need a days rest after a long cycle. Life goes on pretty much as before and, along with a daily multivitamin, I eat reasonably healthily and dont drink alcohol.

Mike

[virdieblue]

Diagnosis in October 2012. I just had my FISH updated and among other things I am Trisomy 12. So far big lymph nodes are my only complaint. I go this morning to meet with a new oncologist. One of our medical centers here has a dedicated CLL unit and I am thinking about switching to it ( though it's a bit like leaving home. My current oncologist is a good doctor and good person.)

I am lucky to have not yet experience fatigue or multiple infections. I am interested to see what the new doctor thinks. 

Virginia

[Jemisavs5 in reply to virdieblue]

I have to say my lymph nodes are really my only complaint too.  Especially around my neck.  I have been getting some headaches too but the doctor says its unrelated.  I wish there was someway to shrink them without beginning treatment.  

[thompsonellen]

Trisomy 12, 17p deletion, and more. Gigantic lymph nodes everywhere. 47 year old mother of a 16 year old. Diagnosed 12/2015, stage 3, treatment starting soon. I do find a get winded more easily, but I'm still figure skating and playing tennis at very high levels. I did stop training for a 10 miler because it wasn't realistic. I think it's important to move as well as you can, for as long as you can. I also lost 20 pounds (intentionally) since my diagnosis. Doctors seems surprised I'm feeling as well as I am, but I think it's the exercise and weight loss. Helps me to keep in mind I'd have bad days even without this. This stinks, and I don't wish it on either of us, but you can, and must keep strong for your kids. Thinking of you...

[Jemisavs5 in reply to thompsonellen]

May I ask what treatment will you be starting?  It seems FCR is the most common for trisomy 12. 

[thompsonellen in reply to Jemisavs5]

I have 17p deletion which doesn't respond to FCR. Barring any unforeseen issues, I'll be participating in an OSU trial with 3 drugs, including ibrutinib.

cancer.osu.edu/cancer-speci...

[ShariS]

I *was* T12/mutated. Told 8-10 yrs before tx originally. 17 months later started 6 months FCR.  The enlarged lymph nodes didn't bother me much (most 3-5 cm range), but one 17.5 cm coalesced mass (of nodes) was sitting on the nerve bundle supplying my left quad. Had wondered why training was hard & I'd been falling inexplicably x 1.5 years :).  Post-FCR I'm MRD-/CR & of course, not T12 (or anything else) at present. Dr. Byrd said when refractory, it's most likely to return w/additional markers (which I've since learned is 'clonal evolution'). But he also said "*if* you were cured, this is what it'd look like...".  Grins. Going into 2nd year of NED. Wishing you all the best!       

[Jemisavs5]

Thank you everyone.  This is so hard.  Everyday I wake up with disbelief that this is happening to me.  However I thank god it's me going through this and not my children. I am praying that by the time I need treatment it may be without chemotherapy.  I have always been so health conscious and never took any medications.  I know that this is still far off and much more research is needed.  

[virdieblue in reply to Jemisavs5]

It may depend in which country you are. The US has approved Ibrutinib as a first line treatment. Its what I'm planning on when I start. My new onc/hemo said that treatment is pretty much up to me (unless he sees something bad happening) It seems to be how much fatigue, swollen lymph nodes and/or infections can be tolerated.

[tclementi]

Hi there, You might be interested in attending this free educational CLL event ( in-person or online) It could help you find ways to manage your fatigue and talk to others like you. Here's the link for more info  patientpower.info/event/cll...

[mklukas]

My husband was 45 diagnosed with trisomy 12.  Similar presentation but blood counts started going up weekly, so they did FCR for 6 months 3 years ago.  He is still all checking out good and did really well through chemo.  Not a cake walk but not too bad.  He feels completely normal and had his first cold in three years this winter.

He has learned he needs to take valtrex daily or he gets cold sores anywhere.  No side effects and no other issues.

He also takes green tea extract daily and vitamin d.

Be hopeful thereally are lots of great therapies.  It does seem FCR works great with some trisomy 12.

Good luck and there is always a silver lining.....somewhere.

Regards,

Caregiver and wife!

[Jemisavs5 in reply to mklukas]

Was he able to work through his treatments?  I can't afford to lose my job and I am concerned when that time comes.  

[splashsplash]

I am Tri 12 dx 10 years ago at age 50. I was two years on W&W then had six months of FC and got a 4.5 yrs remission then another seven months of FCR but I only got six months remission from a horrible treatment - rotten deal! I'm now on Ibrutinib for six months and feel really good, for me it really is a wonder drug. My Leukaemia cells have gone down to 'normal' levels although I have weird bruising and splitting on the finger tips it's a small price for the extra energy and well being.

[Jemisavs5]

Genetic testing question.  How often should you get genetic testing done? Can things change such as mutated or unmutated? How do yo know if you have richters transformation? I am negative for certain markers. Can I become positive? So much to worry about and so confusing.  

[Cllcanada Top Poster CURE Hero in reply to Jemisavs5]

Hi Jemisavs5

It often depends which country you are in since CLL prognostic tests can vary, but FISH should be done prior to treatment.  In the U.S. it was done after diagnosis, but that is changing and being moved later in watch and wait... generally.

You are unlikely to get full IgHV mutation tests in the clinic, so you must rely on flow cytometry CD38 markers, which you already have...  over 30% unmutated, under 30% mutated with about a 75% accuracy... 

Richter's is a very sudden onset of node or spleen swelling, feeling just terrible, night sweats etc, loss of weight and a rapidly rising LDH count, into the 500-600's.  A PET scan is usually performed to check on metabolic rate of cell division...

FISH marker percents can change and you can get additional deletions or additions... mutations etc. more frequently after treatment than before...

You really shouldn't worry about these things, because there is nothing you can do to change your genetics... we all play the hand we were dealt...

chris

[mjcll41]

I have Trisomy 12. I had huge lymph nodes in my neck and a huge spleen, which were both resolved with Ibrutinib. My energy is better than before Ibrutinib but not up to where it was before being diagnosed.