CLL, Spontaneous Regression

Posted by gardeningjunkie @gardeningjunkie, Oct 4, 2023

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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@chaosthefirst

As far as I know, my OncoDoc has not run the genetic test for IgHV mutation. But, at my next visit, I will ask. It would be interesting to compare. Good luck.

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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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Navygirl- 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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@navygirl

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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@navygirl How old are you?

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@lucksuen

@navygirl How old are you?

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60 I don’t know l am going to go to another Dr l hope
😳

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