Hello everyone, My dad recently was diagnosed with CLL and started treatment. He's in the MAJIC trial and receiving V+O. He is IGHV unmutated and cells show trisomy 12. Originally the doctor predicted 5-10 years in remission but now is predicting 3-5 years. Does anyone have experience in these mutations and a faster progressing CLL? I know being stressed over things you can't change is silly, but are these mutations really cause for concern?
Thanks!
Hi ar4687,
-
I have Trisomy 12 and UnMutated, and IMO those predictions are useless.
The statistics say Trisomy 12 is moderate risk of progression but UnMutated shortens the typical remission, but those are averages, and the variations from average are pretty broad.
-
If you look at my profile, healthunlocked.com/user/lan... and click on "read more" you will see that I have a very aggressive CLL that has progressed in months instead of years.
-
I predict that your Dad will have longer periods without needing treatment than I have, but no one can forecast it until there is a track record of his own personal disease & body reactions.
The doctor may have used the experience from your Dad's diagnosis until he needed treatment as an indicator. If his ALC rose quickly and / or his lymph nodes and spleen grew quickly, that may be a better predictor than the Tri 12 UnMutated.
-
But even if he gets 3-5 years, he could follow my path and get treated more often than "normal". We have lots of treatment options and many more in trials. With him in the MAJIC trial, he will get far more attention from CLL experts than other patients.
-
Please read all the chapters at these links
cllsociety.org/cll-sll-pati...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo......
healthunlocked.com/cllsuppo...
-
Len
The time from diagnosis to treatment was almost immediate, but that is due to his lack of medical care prior. The last time he had a blood test was almost 10 years ago, so we have no idea how long it was there before it was detected.
I appreciate your reply and the information you've provided. I will definitely be reading them!
Perfectly said
I am unmutated Trisomy 12. Diagnosed in January. I was very stressed after I received this test result. My oncologist said “You don’t have 53. That is the important news.” I have met several people in past month with this mutation. A number of us had fast growing lymphocytes and WBC results. My lymphs went from 4 in 2022 to 78 in January. Luckily, I have no symptoms and am Rai 0. There are two excellent types of treatment for Trisomy 12 unmutated which is 2 more than there were 10 years ago.
The new treatments are so new, there isn't a huge amount of data to say much conclusively. Except that the newer treatments are, overall, giving people longer remissions as well as working on people who generally didn't respond to older, standard chemotherapeutic agents. There are now 2 schools of thought: does your patient want to try for a cure, or does the patient want to "control" the disease? Because this will somewhat affect treatments, potential side effects, etc.
I have the dreaded 17p deletion along with a TP53 mutation, in addition to a few others. I don't have Trisomy 12. I am OK with "managing" the disease, I was not interested in transplant.
There are also some "new" markers being identified, and the effect that these may play into ability to obtain a deep remission, and for how long, is unknown.
Not to mention, a number of people getting a serious diagnosis may exercise and eat better if they previously didn't. I know my mom didn't stop smoking and drinking alcohol until serious health problems arose. They lessened when she changed her lifestyle a bit.
I’m Trisomy 12 and unmutated. Diagnosed in 2007 and had FCR in 2016 and (knock on wood) am still in remission. Averages are just that. Best of luck to your dad.
I've got those "less desirable" markers and more..... I am 28 months in remission. Getting checked in April/May to see how things are holding. Best to you and your Dad.
I don’t know if this helps. I am unmutated and clear of other mutations (well I was at the last check) I was on mono therapy Ibrutinib for 18 months. I have been off treatment for almost 2 years now, and I am expected to make 3-4 years before I need to return to treatment.
Trisomy 12 and unmutated also. The doctor told me I probably had 6 months to live but he would give me palliative care when the time came. I was only 52. I changed doctors and have had great care. I’m now 72 and living a fantastic life. I don’t think unmutated and Trisomy 12 mean much today. Ibrutinib has been my miracle drug so far. Best of luck.🙏Sally
Trisomy 12, unmutated, 13 years and still here. Had FCR, Ibrutinib and now on clinical trial with Pirtobrutinib. It looks like I get approx. 3-4 years remission between treatments.
Stay informed and healthy,
Jack
Hello ar4687
I am unmutated at 0% mutated, 13q deleted and ATM deletion, so I have very aggressive CLL. I am not going to be cured but rather managed with great new drug treatments being developed every year. Hope is always better than despair. Blessings.
Unmutated, Tri 12, and Notch 1. I agree with Sally - the markers don't have the importance they once did. Bless targeted therapy! Diagnosed in 2012, currently URMD.
Virginia
I also am unmutated and trisomy 12. Diagnosed at age 50. On wait and watch for ten years & I have been treated with imbruvica for the past 5 years. So far, so good. There are very good drugs available now to help control our CLL.
TREATMENT OPTION FOR TRISOMY 12
Trisomy 12
Mutated and unmutated cll for dummies
Resistance-Associated Mutations in CLL Patients Treated With Novel Agents
Unmutated Newbie
