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CLL leukemia: Just diagnosed, what can be done?
Blood Cancers & Disorders | Last Active: Jul 20 8:54am | Replies (200)Comment receiving replies
I have phone appointment on the 27th. The second blood test (IGH SOMATIC HYPERMUTATION ANALYSIS, B-CELL CHRONIC LYMPHOCYTIC LEUKEM) showed "A mutated IGH V rearrangement was identified. The level of mutation identified was 5.1%.
The IGH V allele identified was 3-53*01.".
I am looking forward to the phone call to find out what that means to me and my health. I never thought I would regret not being a lot smarter so I could understand what all these words mean. Even looking them up in medical dictionaries don't really help understand them in relation to what is happening in my body. After all those years in the Army, meeting physical standards, eating and exercising to stay healthy, I feel betrayed by my DNA. So I wait another week to find out if I have a "watch and wait" disease, one that needs treatment "right damn now" or "make sure your will and affairs are in order, you'll be dead by the end of the year" . I can't even figure out what might have caused the problem to start. It is just so frustrating. Sorry to be so negative, but no one around me has anything upbeat and it is beginning to get to me. Aleeab
Replies to "I have phone appointment on the 27th. The second blood test (IGH SOMATIC HYPERMUTATION ANALYSIS, B-CELL..."
Hi @aleeab, I just wanted to drop in to see how you’re doing. You were going to have a phone appt with your doctor on April 27th. Did you find out anything new?
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I can sure relate to that feeling of being betrayed by your body or DNA. Believing I did everything possible to avoid cancer it never occurred to me to consider a blood cancer! But I hit the jackpot with Acute Myeloid Leukemia. In my case it was aggressive and the odds weren’t in my favor. Here I am, 4 years later, in an enduring remission and living my best second life!
I want to encourage you to not throw in towel and feel this is a “get your affairs in order” moment…though it is always a good point to not leave that until it’s too late. But this isn’t a ‘too late’ moment. ☺️
Should you require treatments, CLL has a number of very promising options which help slow the progression of the disease in early stages and to help put a patient into remission.
As for finding the cause, sometimes there seems to be no rhyme or reason to these blood cancers. In my case it was a random event. All of my oncologist hematologists have said the same thing, that I’d drive myself to distraction trying to determine a cause. It can be something as nebulous as a stray gamma ray that set things in action. ‘Stuff happens”
So, when a cancer like this happens, the best thing is to get the news, face it head on and deal with events as they happen. Worrying about ‘what if’s’ saps strength and robs you of precious time. I’m a firm believer in “if-then”. If something happens then I’ll deal with it. That has helped keep anxiety to a minimum and allowed all my treatments to work for me. They will for you too!
You were in the army, so you have an inner strength that you learned to tap into all the years you served. If those skills are rusty, I’m betting they’ll have muscle memory and rise to the occasion when called upon. You’re going to get through this and if you need a perky, annoying cheerleader, I’m your person!
Now you need a distraction until the 27th…how’s your sock drawer looking? 😉