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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
June 9, 2025
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A MyLeukemiaTeam Member

I requested medication 12/24. I did not want organ damage form bad cells attacking my body.My medical people let me know the expense would be $15500 with a co-pay after insurance of $3400. I requested a grant from Leukemia Society which provided a grant of $4000. I began when my WBC count was 75,000 and today 7,100. There are many ill affects but I had not ill affect. I just read that new ill affects could be high blood pressure, brain fog? I understand my medication uses the BTK Inhibitor which attaches to bad cells and does not attack organs. This medication "controls" the spread of bad cells but when the cells mutate control can be lost. The good news is that every year new medications are tested or approved. Each medication will use a totally different means to control the bad cells so a mutated cell can be controlled a second time. I am 73 and I am very active for my age. Last year I went on a week cruise and managed to visit the gym every other day and walk 5-6 miles and climb 20-25 floor on stairs every day. This summer I plan to chain saw 2 dead oaks (I live in an oak forest) then split the wood (2 cords) for heating my house in the winter. My wife limits me to 2 hours and I am super sweating from CLL?) I had read that eating healthy and exercising does benefit people who have leukemia. This illness can last a long time so do what you have to be happy. Celebrating Long Life (CLL)

June 11, 2025
A MyLeukemiaTeam Member

Thank you for taking the time to reply. It was helpful. You are definitely very active.💪

June 11, 2025
MyLeukemiaTeam

The length of watch and wait varies for each person with CLL. Since CLL is a slow-growing cancer, some people may not need treatment for a long time. Your doctor will monitor you through regular visits to check:

- Blood cell counts
- Lymph nodes
- Spleen size
- Bone health
- New symptoms

Treatment typically begins when Show Full Answer

The length of watch and wait varies for each person with CLL. Since CLL is a slow-growing cancer, some people may not need treatment for a long time. Your doctor will monitor you through regular visits to check:

- Blood cell counts
- Lymph nodes
- Spleen size
- Bone health
- New symptoms

Treatment typically begins when you develop new symptoms or tests show your CLL is worsening. There's no set timeline - some people remain in watch and wait for many years while maintaining good quality of life. Regarding medication costs: While the search results don't specifically address discounts or coupons, it's recommended to:

- Contact the drug manufacturer directly about patient assistance programs
- Speak with your healthcare team about more affordable treatment options
- Check with your insurance provider about coverage
- Look into nonprofit organizations that provide financial assistance for cancer medications

Your healthcare team can help guide you to available financial resources and support programs.

June 9, 2025

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