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gardeningjunkie (@gardeningjunkie)

CLL, Spontaneous Regression

Blood Cancers & Disorders | Last Active: Nov 1, 2023 | Replies (24)

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@bharty615

Hi, I was diagnosed with mbl which changed to cll. Now after 11 years with no meds it has gone into remission. dr says it's a miracle.

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Replies to "Hi, I was diagnosed with mbl which changed to cll. Now after 11 years with no..."

@bharty615 ,I'm glad to hear another piece of good news! Have you done anything special for your health? For example, in ter ms of diet or exercise, have you taken any supplements?

That's really amazing. So rare. Am I correct assuming you have a mutated IGHV and good CD markers (none or only 13q)?

bharty615 your sharing encourages all of us about remission because an 11 year remission is uncommon, most doctors never get to see it. But I am confused as to whether you are you in remission or has your CLL "spontaneously regressed"? I was told that remission is different than regression. If a patient was treated for CLL and their CBC returns to normal that is a remission. If a CLL patient was never treated with meds and their CBC count becomes normal again it's considered a regression. You wrote that after 11 years with no meds it has gone into remission. Does that mean you haven't taken meds for 11 years and your remission is holding or that you never had meds and consided to have a "spontaneous regression".
How many years did you have MLB? Were you treated. How many years did you have CLL. For me I lived with untreated CLL about 10 years, smouldering, when my counts stabilized and then another 5 years when the counts began improving back to normal. I was also told CLL could mutate into other blood cancers, yet your mlb did the opposite and mutated into CLL.
If you did take meds 11 years ago please share what you took.
Presently my WBC, RBC, Platelets and Lymphocytes are all normal, yet in the last 5 years my WBC,RBC and Platelets, keep slowly declining and are now in the bottom of normal so it seems my blood is still transitoning, to what I have no clue.