Should I See A CML Specialist or Not?

During the past few weeks, I have been contacted by people either newly diagnosed with CML, or people receiving concerning information regarding their response to their current treatment regiment.

My response, every single time, has been to seek the advice of a CML Specialist for a second opinion. Why one might ask, do I feel so strongly about seeing an actual specialist for treatment? Well, the simplest reasons that I can give is that a CML specialist not only stays current with the ever-evolving treatment of CML, they also see other CML patients.

By seeing other CML patients, they have a wealth of information and experience, from which to draw. They have gathered this information by seeing many different responses, in many different patients, to not only cancer but its' treatment, as well.

Chronic Myelogenous Leukemia is more often than not, a lifelong blood cancer. During this journey, it is not unusual to experience ups and downs; of cancer, and its' treatment. By seeing a specialist in this field, you are giving yourself, in my opinion, the best possible shot of controlling your cancer; long-term.

Do NOT wait until it is too late!
Specialists are more likely to recognize unusual, or concerning patterns and trends in your response to your current treatment (as they have been exposed to more patients, with the same disease) than someone who has only seen one or two CML Patients throughout their career. This experience and knowledge alerts your oncologist to red flags and allows you the opportunity to adjust your treatment plan quickly before the situation becomes dire.

CML often cruises along without any complications, but when and if a complication arises, don't you want the most experienced person in your corner? Don't you want the changes to be recognized quickly? Don't you want someone that has seen what you are going through before? Don't you want someone that has tried many different options and seen their outcomes as a basis on how they should treat you? Or do you want to be the guinea pig? Do you want to risk your disease progressing to an accelerated phase, or even blast crisis before seeing a specialist?

I know, for a fact, that I do not.

I know that I want someone experienced in my disease, in my corner, right from the start. Someone that "knows" me and my medical history.

I want someone that says to themselves, "I have seen this before." I want someone that has a wealth of information from which to draw and I want someone to recognize the early signs of complications. I do not want someone that is guessing, or reading "typical treatment protocol." I want someone that treats CML on a regular basis, not just when I walk through the door.

During the past eight years, we have lost many CML patients in our community. I truly believe that most of the deaths occurred because of improper treatment and the failure to recognize the warning signs that these patients were starting to experience, before entering a dangerous phase of their disease. By the time these people realized that they really needed a CML specialist, it was often too late.

I believe that having established a relationship with a person that is the top in their field is a very wise choice. I also know that I want to be around, for a very long time, and I believe that seeing a specialist is my very best option for doing so.

Love yourself enough to see a specialist!
I know that logistically this is not always the easiest thing to do. I live in Boise, Idaho and my oncologist is in Los Angeles, so I know all about the inconveniences. I most often see my oncologist three to four times a year, and when I am unable to physically "see" him, I am able to have my blood drawn here at home, and then sent to the lab for testing. Modern technology and ease of communication are great for long distant "relationships"!

I also know the importance of having a great medical team right here in Boise to deal with side effects and emergencies. I feel prepared to tackle any complications that may arise.

This is your life; don't you deserve the very best care available?

If you are not seeing a CML specialist, please consider at the very least, a one-time consultation. Many specialists will agree to work with your local oncologist, and by establishing a relationship with a specialist, they will be on board, should any complication arise.

You are worth it!

My best to all of you CML Warriors!

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  1. In Australia - patients or cancer clients are referred to not an oncologist but that of a haematologist or that of a physician haematologist/oncologist

    1. Sue, is that because there are no specialists? or are they referred later to a CML specialist if they deem it necessary?


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