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So I Have CLL My Doctor Says We Should Watch And Wait My WBC Is At 19 At What Point Should I Be Having Some Kind Of Treatment

A MyLeukemiaTeam Member asked a question 💭
West Jordan, UT

My CLL is in my marrow just wondering should I get a second opinion
Thanks
Victor

October 17, 2020
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A MyLeukemiaTeam Member

Victory, unless your blood values really go out of range, like low RBCs, low/high platelets, etc and/or you remain basically asymptomatic (no spleen/liver enlargement, lymph node enlargement etc,) they do not start treatment. If therapy is started too early, then when you really need it it is less effective or ineffective. That’s why they wait as long as possible. My oncologist says since CLL is incurable but manageable chemo is basically ineffective unless there is something else underlying. You beat your healthy cells to death, but those cancer cells cannot be completely eradicated. That’s why he recommends immunotherapy coupled with targeted therapy for first line defense against previously untreated CLL. Definitely look at the Cleveland Clinic, MD Anderson, Mayo, and Sloan-Kettering sites online. Lots of great info!

December 23, 2023
A MyLeukemiaTeam Member

Two Hematologist and an Internist have all told me the same thing, treatment generally starts when symptoms start, as long as red blood cells and platelets are normal and lymphs are not doubling within six months. I agree just trust your doctor

February 3, 2024
A MyLeukemiaTeam Member

My WBC’s are 89,000. I’m still on Watch and Wait. I feel fine

December 24, 2023
A MyLeukemiaTeam Member

My WBC has been up to 155000 and I am still W and W per my preference. Oddly, it has come down to 130000 in last six months.

June 16, 2023
A MyLeukemiaTeam Member

I'm not a doctor and certainly not an oncologist but I did work in a medical lab for years doing hematology. The white cell count (WBC or leucocytes if you will) are the first indicators of things going south. Then specigically what are your lymphocytes (your little immune response guys of the white cell group), doing ....the absolute value in a percentage. Now, what are your red blood cells doing....are you becoming anemic because your white cells are crowding out your red cells. Also, what are your platelets doing, what is your ESR doing, what do your lymphocytes, or for those with AML what do your neutrophils look like under a microscope. These are all things our doctors have to consider before making their decisions. To get a bit more complicated, what genetic markers your disease has shown from the bone marrow and FISH tests. So what I'm trying to say, it's a bit more than just one number. Of course symptoms have to be taken into consideration because no two bodies behave the same. For example, I am frustrated my oncologist doesn't acknowledge my bone pain because the medical books don't recognize this for CLL.....yet I have terrible bone pain!!
Wordy I know, but that's my 5 cents worth. Have a blessed day everyone.

May 26, 2022

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