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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.

Any one with CNL

A MyLeukemiaTeam Member asked a question 💭
April 11
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A MyLeukemiaTeam Member

I have learned that CLL is a long term illness. There are medications to control this illness so you can have a normal happy and healthy future. I am 74 but I get around like I am 40. I visit the gym 3 times a week and I do hard tasks at my property. This week I spent 4 hour cutting weeds very early in the morning to avoid the sun and keep cool. I eat healthy which benefits my health. I researched this illness and medication by joining other groups and reading questions and answers. I think medical people refrain medication because of the expense ($15500 per month.) I did get. money grant to pay the copy ($3400) so my cost was $0. Each of my blood test is 100% normal and my WBC count is 7500. Celebrating Long Life (CLL)

April 15
MyLeukemiaTeam

What are patient experiences like when living with chronic neutrophilic leukemia?

Living with chronic neutrophilic leukemia (CNL) can be challenging, especially as the disease progresses. CNL is an extremely rare blood cancer where the bone marrow produces too many neutrophils, a type of white blood cell.

In early stages Show Full Answer

What are patient experiences like when living with chronic neutrophilic leukemia?

Living with chronic neutrophilic leukemia (CNL) can be challenging, especially as the disease progresses. CNL is an extremely rare blood cancer where the bone marrow produces too many neutrophils, a type of white blood cell.

In early stages, CNL often doesn't cause noticeable symptoms. As the disease advances, people may experience:

- Feeling unusually full after eating
- Persistent fatigue
- Sore throat
- General feeling of being unwell
- Unexpected weight loss
- Fever

The average survival time is about two years after diagnosis, though some people have lived more than 20 years. About 10-20% of people with CNL may see it transform into acute myeloid leukemia (AML), often within two years.

Treatment focuses on managing symptoms and may include chemotherapy, immunotherapy, or stem cell transplantation. Connecting with others who understand can be valuable, as CNL is so rare that finding community support helps many people navigate their journey.

Managing stress through support systems, therapy, or mindfulness practices can also help with the emotional challenges of living with this diagnosis.

April 11

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