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A MyLeukemiaTeam Member asked a question 💭
Camillus, NY

Newbe
Just found out.

June 15
 · 
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A MyLeukemiaTeam Member

I always think of wait and watch and an experiment with a person's health? I like "share and care" which means sharing information and care for a person's mental and physical health. My watch and wait lasted 10 months when I discovered information about the many different medications and how the medications control those bad cells. I never had any lumps of bumps from CLL. My doctor did fail to tell me I had an enlarged spleen (Stage #3 CLL) from an MRI my first month with CLL which means medication required. I do not know how doctors can see lumps inside a person's body so this makes the experiment strange? I hope your doctor or you set up what your limit of WBC count will be before the experiment changes to medication? My doctor kept increasing the "worry" limit. After 3 limit changes I requested medication.. After taking the medication for 2 years I now take my medication at 50% dose with 100% normal WBC count of 7600. My medication may be effective for 10 to 20 years or until the bad cells mutate and can not be affected by the medication. Find information, join different CLL groups to read questions and comments, eat healthy and exercise which benefits your health. Celebrating Long Life (CLL)

June 20
MyLeukemiaTeam

First of all, a brand new diagnosis can feel overwhelming — take a breath. You're asking exactly the right questions.

"Watch and wait" (also called watchful waiting or active surveillance) is a very common first approach with CLL. It might feel strange to be told to wait when you've just been diagnosed with cancer, but Show Full Answer

First of all, a brand new diagnosis can feel overwhelming — take a breath. You're asking exactly the right questions.

"Watch and wait" (also called watchful waiting or active surveillance) is a very common first approach with CLL. It might feel strange to be told to wait when you've just been diagnosed with cancer, but this is actually a well-established and carefully considered strategy. Here's what watchful waiting generally looks like:

- Regular blood tests to monitor your white blood cell counts and track any changes
- Frequent doctor visits to check on how your condition is progressing
- Symptom tracking — you'll want to note any new or worsening symptoms and report them to your doctor
- Genetic testing of your cancer cells may be recommended during this time to help plan future treatment if needed

The goal is to keep a close eye on things so that if your condition starts to change, your care team can act quickly. It's worth knowing that for many people with CLL, the outlook during watchful waiting is no different than starting treatment early — and waiting means avoiding treatment side effects, which can actually improve quality of life.

As one MyLeukemiaTeam member put it: "I've been in watch and wait since I was diagnosed. Hope to live the rest of my life watching and waiting." The emotional side of waiting is real too. Stress and anxiety are very common during this period. Some things that can help:

- Staying socially connected with friends and family
- Keeping open communication with your doctor — ask questions freely
- Seeking a second opinion if you ever feel your questions aren't being answered clearly
- Finding small ways to practice self-care, like short walks or journaling

You're not alone in this — many others have walked this same path and found ways to navigate it well.

June 15

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