Friday, June 28, 2019

Low Whites, Reds and Platelets

I am not a doctor, I do not have a medical degree, but what I do have is eight and a half years of experience dealing and living with chronic myelogenous leukemia. I have my own personal knowledge, as well as the observations and conversations from many others living with this disease, oncologists that specialize in CML, and pharmaceutical companies which manufacture the drugs that keep us alive.

Not to mention all of the data and research papers that I have studied throughout my journey.

The topic that has prompted this post is the alarming number of newly diagnosed CML patients that are stating that they have either stopped (temporarily) their treatment or had their TKI dropped to a low dose to combat low "numbers" in their CBC, not to be confused with their PCR test results.

The numbers that most of these people are referring to as "low numbers" are white and red blood cells and platelets.

What confuses and frightens me the most is that this decrease in "numbers" is a common occurrence during the beginning of treatment for CML. Experienced CML specialists know this, and know how to treat the neutropenia, as well as the CML.

There are options, besides stopping treatment, or lowering your TKI to a dangerously low dose of medication; ask about Neupogen injections, transfusions and diet to help stimulate your bone marrow into making the desired amount of white and red cells and platelets; eventually, your body will adjust to your treatment, and your CBC will become stable.

While a Complete Blood Count is important to your overall health, it is not the only test that should weigh into the reduction of your life-saving medication. CML can be a sneaky disease, do not allow it to progress silently into blast crisis due to a medication reduction during the initial treatment or your disease.

It is important to remember that you have cancer. Cancer treatment is difficult on the body, it is difficult to maintain "perfect" health during its' treatment, especially in the beginning stages of treatment.

Expect low numbers in your CBC in the beginning, and pray for low numbers in your PCR. Learn what this means and how lowering your TKI dose prematurely can affect you and your CML.

As I have often stated, seek out a true CML Specialist, not just a haematological oncologist; one that is familiar with low counts in the CBC, one that has experience with many CML patients and knows what to expect, and how to treat you accordingly.

Know that in the beginning, your body has much to adjust to and that eventually, it will become accustomed to the treatment and life and living with this disease will eventually become easier. Know that this is a marathon, not a sprint and that you cannot expect to treat cancer without experiencing side effects and speed bumps.

FaceBook: CML: A Place for Hope and Humor

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