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CLL: How do you evaluate well-meaning tips from friends?
Blood Cancers & Disorders | Last Active: Mar 23 1:13pm | Replies (36)Comment receiving replies
Well.
I have been diagnosed with CLL. Mine is rather benign/slow as far as my white blood cell count is concerned. I am 75 and things start to happen as one get older. No treatment so far. But “it is what it is”. I just deal with it (for some people that is easier said than done). Listening to one’s friends expressing themselves about one’s condition is well intentioned but in my opinion serves no useful purpose that’s why I keep my CLL close to my vest. I told my Hemotologist that I want square business about my CLL no sugarcoating. Friends are well intentioned but dam near all are not doctors. We are all terminal and one should keep that in mind. Anyway, that’s how I deal with CLL be that is it may.
Replies to "Well. I have been diagnosed with CLL. Mine is rather benign/slow as far as my white..."
You're incorrect, some of us do have it spontaneously regress. I'm one of the 2%. I was smoldering for 10 years after my bone marrow biopsy confirmed CLL. My white counts were never terrible, never got higher than 20,000 my lymphocytes kept get getting higher also. Now 25 years later I have had normal normal white counts and normal lymphocytes for 10 years. No medical treatment ever given. Look up spontaneous regression. My oncologist/hematologist still insists I have my blood taken every year. It's rare, but it does happen. He's named it Pre-Leukemia. Stay positive and get outdoors and be active as much as you can. Someone suggested Green Tea, I drank that for 9 years with no obvious benefit. A friend recommended Muscadine Grape supplements, after that my counts started dropping within a year. Coincidence seems likely, but I feel obligated to mention this. All my blood counts are documented.
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Hi @bochos. We can sure get a mixed bag of unsolicited advice when we get diagnosed with an illness. I had my share too. I chose to keep my issues pretty close to my vest as well, but news trickled out and then the phone calls, emails and texts began inundating me. Finally had to put my phone on ‘do not disturb’ and my husband and daughter fielded the surefire, miracle cures for my cancer! 😅
It’s great to hear you’re doing well with your CLL and are doing your best to keep control of well meaning input. We can be ‘people of age’ but our health issues don’t have to be the main topics of conversation! I have too much other stuff going on…how about you?