Hello. I am new to the group, just diagnosed this month. My last CBC showed absolute lymphocytes at 5280. I was feeling pretty good after my doctor explained what CLL is, how it progresses etc. But today I got results of another test back with the following:
IVGH Borderline Mutated
Mutation Rate 3.0
VH3-21
I have a call into my doctor for further explanation. But its the day before Thanksgiving her in the United States. I understand this is associated with poor prognosis and aggressive disease. Is it as bad as it sounds?
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lmav
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Thank you, that was my understanding. But the test indicates that the expression of the VH3-21 is reported to be associated with poor prognosis, so I'm very confused.
Thank you for taking the time to reply, it's very kind of you. I also noticed that most of the articles on this mutation are very old, so I'm hoping it doesn't mean what it once did. I'm been somewhat overwhelmed and on a roller coaster since my diagnosis. I tend to panic at the slightest thing. But what you wrote helps put things in perspective.
Mutated is far far better than unmutated, or so it was for decades. Now with the newer novel oral agents (pills) the mutated or unmutated status is generally no longer a part of the equation.
In addition the most notorious bad prognosticators for certain CLL markers have been addressed in the last couple of years with the newer meds. The new meds have become a real game changer. Some believe we are on the verge of a CLL cure and many more believe we will most likely die with CLL and not because of CLL. Treatment for CLL is looking more like diabetes...not curable, but treatable for most.
I am on one of the new drugs called Ibrutinib. It’s been just 4 years from my diagnosis and the landscape has changed dramatically.
The first doctor I saw wanted to put in a port and start chemo immediately. I saw a specialist and waited a couple of years to treat.
By the time is started treatment, ibrutinib had been approved. So after freaking out about having leukemia, I now control it with an oral pill a day. No one knows how long ibrutinib will work but one of the few mature studies they have on people taking Ibrutinib as a first treatment has most everyone doing well at 7 years out.
A Cll diagnosis sucks, but for most of us diagnosed today, mutated and unmutated, it’s a disease that can be managed for a long time, if not indefinitely.
Exactly my philosophy Scott! While it's human nature to be upset at learning we have cancer, or for that matter any news about our circumstances of which we were previously unaware, our situation was the same before we learned that news. The big change is that we are now empowered to work out ways we can improve our situation.
Lmav, that's the inspiration for this collection of tips we can use to love well with CLL
i'm no expert but i have 100% unmutated and that is associated with an increased chance of richter's transformation . the ighv3-21 does say that it is associated with an inferior outcome similar to tp53 aberrations irrespective of mutation status. i am treated at md anderson and i recently got my test results and it says the above about the 3-21 flavor that you have. i'm not so sure that mutation status doesn't matter any more but that might be the case. i was diagnosed just last month but have been learning absolutely all that i can iin that short time. best of luck and let us know what you find out!
My doctor was really reassuring. He told me that the IgHV mutation mattered more. I'll get more clarification when I see him in January, but maybe H/32-21 isn't as important with the new treatments? If I learn more at my appointment, I'll be sure to post. Thanks so much to all of you for taking the time to reply. I've been overwhelmed with your kindness!
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