Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
@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?
Have only done keto nothing else not even otc pills.
-
Like -
Helpful -
Hug
1 ReactionThank you very much for your response，it's very helpful to me!
I've obtained some keto information from Google, and I will give it a try
-
Like -
Helpful -
Hug
1 ReactionThat'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.
hi，@5gk 。I've noticed the comments you've made. Have you been drinking green tea and taking green tea extract orally for the past two years? How do you feel now?
Hi. I drink green tea every day. I do not use the extract. Perhaps you are remembering someone else's post?
I credit the green tea with keeping my inflammation down. It has made a tremendous difference for me. I have adopted an anti- inflammatory diet since diagnosis also.
-
Like -
Helpful -
Hug
1 Reactionbharty, I have a similar situation. I was diagnosed with B-CLL about 15 years ago. B-lymphos were elevated , but few clinical signs (I slept more). About 5 years ago, the B-lympocyte count went to normal. The lympocytes that are aplastic with the specific markers account for 30% of my B-lymphos. So, general blood work shows normal b-lymphos, but the leukemia is still there.
I feel pretty blessed and hope I continue on as present. I hope you do as well. Yes, my OncoDoc thinks I am also amazing.
FYI, I am 77, W male, otherwise pretty healthy.
Ron
-
Like -
Helpful -
Hug
4 ReactionsMay I ask, are you mutated or unmutated IGHV? I am unmutated at 2% and wonder if will actually respond as mutated because I'm right at the cut off at 2%.
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.