Hello!
My mom was recently diagnosed with CLL and just learned on her FISH test she has Trisomy 12 which is 45% of her cells. I was wondering if anyone had experience with with Trisomy 12 and how long you were able to stay in watch and wait. My mom has no symptoms at this time and has low Neutrophils and high Lymphocytes. She also had a PET scan which showed no sign of lymphoma. My mom is only 55 so I keep praying her young age will help her prognosis of this.
Hi Jenna and welcome to our community!
Trisomy 12 is a intermediary risk factor for CLL and responds well to modern treatments.
When you say of your Mom. "She also had a PET scan which showed no sign of lymphoma.", that is kind of expected with CLL, because of the chronic nature of CLL, plus CLL cells don't take up much of the fluorodeoxyglucose (FDG) tracer, preferring lipids as an energy source. healthunlocked.com/cllsuppo... That she's had a PET rather than a CT scan, suggests to me that your Mom may be seeing an oncologist rather than a CLL specialist or at least a haematologist that specialises in blood cancers? The good news is that her CLL is probably fairly slowly growing for it not to show up on a PET scan, because more active CLL can show up on a PET scan.
I'm guessing you are from the USA, given your use of 'mom' rather than 'mum'. In which case, the CLL Society has a list of recommended CLL doctors*, cllsociety.org/newly-diagno... plus they can arrange one free video consultation with a recognised CLL specialist. cllsociety.org/programs-and... I suspect your Mom is in early stage CLL, so it might be worth keeping that free appointment option for later.
You'll probably get more replies if you lock your post as is explained here: healthunlocked.com/cllsuppo...
Meanwhile, check our Pinned Posts section for more information the help your Mom live long and well with CLL - something that is increasingly likely. healthunlocked.com/cllsuppo...
*The list of recommended CLL doctors is international, but has far more entries for the USA than other countries.
Neil
Jenna, I have Trisomy12 as do many others. My W&W only lasted a year before treatment, but the disease is very heterogeneous and I am also unmutated-IGHV which tends to be more aggressive. My presentation is SLL with normal blood counts, but consistently growing lymph nodes. I have also had 2 PETs which showed a good deal of widespread nodal activity, but nothing in my bone marrow. My SUV tended to be in the 3.5 range for most of the noteworthy nodes, but one of my abdominal nodes showed an SUV of 6.4 and had grown to about 6cm so it was recommended that I start treatment. I have to say I'm 2 months in to a clinical trial of time limited Pirtobrutinib and Venetoclax and everything is great.
I hope your Mom gets a long W&W and a slow progression but if not, there are a lot of good treatment options to knock this thing down.
All the best, Bigfoot
The impact of trisomy 12 seems to be quite heterogeneous. This is probably why it is not taken into account in the standard prognostic score called CLL-IPI. As AussieNeil said, trisomy 12 is an intermediate risk factor regarding the time to first treatment. It is comforting to know that trisomy 12 generally responds well to treatment.
Try to get all the info to calculate the CLL-IPI if you need a prognosis for the progression of your mother's CLL: lls.org/leukemia/chronic-ly...
Do not look at the the associated overall survival (OS) if you search for CLL-IPI, it is outdated (from 2016). Just the time to first treatment (TTFT) is relevant.
I have Trisomy 12 and have been going strong for over 20 years with CLL/SLL. Currently I’m on Ibrutinib and am able to enjoy life and stay active. Good luck. Sally
JennaP61 -
I was diagnosed at age 56 in 2011 with Trisomy 12 CLL. I had an IGHV test in 2013 that showed mutated IGHV gene - a good sign. I went 12 years before the fatigue, lymph nodes, and spleen got serious enough to get an opinion from a real CLL specialist. I started treatment shortly therafter, though I'm sure I could have gone longer. I'm very happy with the result, and feel much younger now. I'm 70 now.
=seymour=
Jenna I was diagnosed with CLL/SLL in 2007 at 60 yrs old with trisomy 12+, unmutated, CD38. Thankfully I was able to see specialist in NY ALTHOUGH I HAD MOVED AWAY TO FL where they wanted to started treatment in 2011.. I saw specialist Dr Rai in NY for second opinion. He said no treatment yet as a new drug coming down the pipeline and wanted me to watch and wait as long as I could. Then In 2018 started imbruvica dosage at 280 mg because I have many drug allergies. Thankful I am still on it and hope it continues to work . I was able to go 11 yrs before treatment . When WBC over 300,00 goint to almost 700,,000 when I stated imbruvica, RBC around 7, enlarred spleen and had enlarged lymph nodes when diagnosed in 2007. Hope your Mpm can wait a long while before starting treatment. Seeing a CLL specialist is important. Hoping she has a long watch and wait.
Jeanie
I have Trisomy 12 unmutated. When my lymph nodes were swollen around the neck and groin I got a CT scan which also showed the spleen was 50% larger. Over 90% of the cancerous cells in my flow test were present. At this point my WBC and lympth counts were increasing rapidy with only a bit of discomfort from the swollen nodes. It was obvious where I was going so got approved for the Majic trial Acala-Veneto arm. Within 2 weeks the swelling was history and blood cell counts were way down. At the 2 year mark in the trial my MRS was down to 0.03%. There were no significant side effects from the meds other than cross-eyed late at night, gout from not drinking enough water and, maybe, exercising too hard and getting out of breath climbing to our 2nd floor. Those all resolved within a few weeks after stopping the meds.
CLL treatment and Lymphoma detected.
Need help reading FISH results
CLL WITH NO TREATMENT 
A recent consultation with a CLL specialist, and confirmation of genetic markers
