Wednesday, July 31, 2013

CML Patients: What Should I Ask My Doctor?

Hearing the words, “You have leukemia” is the beginning of a new, often frightening, and unexpected journey. Once these words have sunk deeply into your brain, you will want to do everything in your power to ensure that you map out the most favorable path in which to lead you, on your way.

Often when people are diagnosed with cancer, they have little knowledge of what their future holds. They are often scared, confused and do not know what to do. One of the first orders of business, is to secure a competent oncologist; one that specializes in their specific type of cancer. Chronic Myelogenous Leukemia is a rare form of leukemia and therefore should be treated by a medical professional whom specializes in CML.

CML is a chronic cancer, meaning that it is currently controlled by medication, as opposed to being traditionally cured. It is a beast, all its’ own; it sets up shop in your bone marrow and acts like an “on” switch for the production of white blood cells; white blood cells that eventually take over your bloodstream; unless the switch is turned off. This is where your oncologist comes into play and why it is so important to choose a hematological oncologist that is familiar with CML. This person will likely be a part of your life, for the rest of your life, so choose wisely!

Many people are under the impression that they have little choice when choosing a doctor; they do not realize that it is their prerogative to choose a doctor that is a good fit; for them. They do not know how to “Doctor Shop” and do not know what to ask a prospective physician.  They revere doctors’ word as law and often continue to employ a doctor even though they are uncomfortable.

For me, rapport is the key; I do not wish to feel intimidated or rushed and I want to feel as though my input is considered and respected. I want to be able to trust my physician and to question him, as well. I also want to be able to reach my physician in case of an emergency or panic attack! With Chronic Myelogenous Leukemia there is also a list of questions that we all should ask.

Questions to be brought to your first appointment:
1.           In which stage was my Chronic Myelogenous Leukemia diagnosed?
2.           What are my treatment choices?
3.           What are the expected benefits for each treatment?
4.           What are the risks involved in each treatment?
5.           What are the side effects of each treatment?
6.           How will these treatments affect my daily life?
7.           How will these treatments affect my overall well-being?
8.           Should I consider clinical trials?
9.           Which clinical trials are available to me?
10.         What are the chances of my cancer progressing to a more serious stage?
11.         What are my chances of being cured?
12.         What are the chances of me developing another type of cancer; due to treatment?
13.         What changes should I make in my current lifestyle?
14.         Should I follow a specific diet?
15.         Am I allowed to ingest over the counter medication along with my treatment?
16.         What symptoms and/or side effects should I report to you?
17.         What is your experience with CML?
18.         What is the protocol in communicating with you?
19.         Do you believe that you and I have the rapport that will best serve my medical needs?

I know that this may seem like a lot of questions, but I believe that they are important ones. I also believe that you, as a survivor, must listen and asses the questions that the physician asks you; are they relevant to your CML, your treatment and your quality of life? If so, and you like the answers to your questions, consider yourself extremely fortunate, as this person will likely be a part of your life, for the rest of your life.

It is your choice; choose wisely.



  2. Three medication rejections later.......and 5 months off medication....I now start the journey again. Sometimes I ask myself why bother. This is a strange disease.......


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