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CLL, Spontaneous Regression
Diagnosed with CLL at age 50 from blood tests and bone marrow my disease progressed slowly for 10 years without treatment.
After 10 years my blood counts started improving and 15 years after my diagnosis no signs of CLL were present in my blood.
This is referred to as a Spontaneous Regression and rare.
Now at age 75 next month, I've stayed regressed for 10 years but my oncologist won't call it a cure and I only need to have blood taken once a year.
Has anyone else experienced this or know of others that have regressed spontaneously?
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I don’t know what to think my blood came back with CLL
Now my doc is telling me to wait
I am with VA
I requested a second opinion hoping to be referred out
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1 ReactionNavygirl- By all means get a second opinion. VA services should approve a second opinion. Was any other testing done to verify CLL, like a bone marrow? I was diagnosed 24 years ago and there may be newer, less painful testing methods.
In the early stages Watch and Wait is all that is done for a reason. I assume you are symtom free now in the Watch and Wait phase and the reason you wait is because the treatments loose effectiveness with repetition,
You are taking the right approach, not just waiting, but seeking knowledge about CLL. The internet will have information about the newer effective treatments which I have read can put you in remission and slow down the CLL advancement.
Before I got CLL I only understood what a few of the tests on my CBC meant, like WBC, RBC and Platelets. You now should learn to look for CLL markers in your CBC like the various Lymphocytes. Learn their significance. To begin with you should have your blood tested every 3 months for a year to learn how rapidly your blood is advancing. If you are a smoulder, like most are, your CLL will advance slowly. If that's established you will go to having blood draws every 6 months. I always asked to have my blood drawn days before my appointment because then I could read the results on line and prepare a list of questions. If you wait until the day of your appointment and the doctor simply reads the results it's simply too stressful and confusing.
Even though I have been clear of CLL for at least 10 years my oncologist still wants my blood checked annually.
I joined multiple blogging groups, this Mayo site is good one. Others dealing with this disease will share the latest news and treatments which your oncologist/hematologist may not be aware of. You are dealing with one disease, your doctor is treating hundreds of types of cancers or blood diseases and like many of us you wil be motivated to learn as much as many doctors know about CLL.
Would you share with us what your white count is and lymphocytes are presently? I was diagnosed early with my white count only 11,500, which is not unusual if you are fighting an infection, but the key was that my lymphocytes were elevated. I was in denial because I felt great, symtom free. The bone marrow results made me accept it.
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4 Reactions@navygirl How old are you?
60 I don’t know l am going to go to another Dr l hope
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1 ReactionHi @5gk I just learned I am unmutated @ 0%... at this point I don't know what that means. I would appreciate anything you have learned!
Paul
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1 ReactionHello, Paul. The best advice I can give you, or anyone with this disease, is to go to the HealthUnlocked.com support group. You will learn tons of information from very warm and knowledgeable people. Information is based on scientific fact, not someone's ideas. Though all ideas are welcome for discussion. NO SUCH THING AS A STUPID QUESTION. So don't be afraid to ask ANYTHING. It is an amazingly supportive group of fellow CLLers guided by knowledable administrators. I joined the UK group. You can choose the USA group too. I meant to check out the USA group, but have been so pleased with the level of knowledge, in my group, that I didn't get to checking out the USA group!
I sincerely hope you join us!
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6 ReactionsI have followed the same pattern. I was diagnosed with B-lymphocytic about 20 years ago. Lymphocytes elevated for over 8 years, and now, on blood work, you would not know I have CLL. But, among my B-lymphocytes, there still are neoplastic cells, just not near as many. After over 5 years at this level, we are testing blood once a year. I have never had any treatments, just benign neglect! I am 77, male, Caucasian. Keep your health up. Reduce sugars, no smoking, reduce alcohol (I hate that one), reduce excess weight, eat right, keep active physically. Good luck and enjoy life!
Ron
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3 ReactionsThat's amazing!
Have you done anything special for your health?
Did you do anything special that might have helped your regression?