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Monday, August 22, 2011

Important Questions for Newly Diagnosed (CML) Leukemia Patients


I am often asked how I “knew” what to ask my doctors. The answer to that question is simple; I really didn’t have a clue. I believe that my questions came from my ever inquisitive and often annoying personality, as well as my innate nature. I am sure that my inability to completely “trust” authority comes into play, as well.

Hearing that you have cancer for the very first time is a shocking experience. It leaves you dumbfounded, confused and scared. Chances are you know very little about your disease, other than what you have heard in the media, or experienced through friends or family. I know that when I was first told that I had leukemia, the only thing that I knew for sure was that it was a blood cancer and that I may need a bone marrow transplant. I had hours and hours of waiting in the emergency room, before even seeing a doctor, and then after I saw him, I still knew little more than I had when I was first admitted.

Fortunately my computer arrived later that evening and I was able to begin my research. Hopefully, if you are newly diagnosed, my experiences will be able to help you to know what to ask and what to expect. Of course these questions are based on my diagnoses of chronic myelogenous leukemia, but I am sure that they would apply for many other diseases and cancers.

Here is a list of many questions that you will want to ask your doctor:

         1.     What stage is my Chronic Myelogenous Leukemia? Chronic, Accelerated or Blast Crisis
         2.     What are my best treatment choices? Chemotherapy, leukapheresis, Gleevec, Tasigna, Sprycel and/or a Bone Marrow Transplant?  These treatment choices are all a possibility and are sure to differ from patient to patient, stage to stage, doctor to doctor.
         3.     What are the expected benefits of 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.     How much damage will these treatments and medication do to other parts of my body?
         9.     Should I consider clinical trials?
        10.  What clinical trials are available to me?
        11.  What are the chances of my cancer returning or progressing to a more serious stage?
        12.  What are my chances of being cured?
        13.  What are the chances of me developing another type of cancer?
        14.  What changes should I make in my current lifestyle?
        15.  Should I follow a specific diet?
        16.  Am I allowed to ingest over the counter medication along with my treatment?
        17.  What symptoms should I report to you?
        18.  How often will I need to see you?
        19.  Are you available by email? 
        20.  Is financial help available for the cost of my prescription?
        21.  Are there support groups?
        22.  How many CML patients have you treated?
        23.  What do I do if I miss a dose of my medication?
        24.  Who do I report my side effects to?
        25.  Where can I go for more information about my treatments and CML?
        26.  What are the chances that my CML will progress to a stage that I will need a bone marrow transplant?
        27.  At what age is one considered “too old” to receive a bone marrow transplant.
        28.  Is it better to have a transplant donor ready and available “just in case” or should we just cross that bridge when we come to it?
        29.  Do I need to take “extra” precautions regarding my health?
        30.  Can I travel? In the country? Out of the country?
        31.  Is CML going to kill me or am I going to die with CML?
        32.  Will I ever feel “normal” again?
        33.  Is there support for my family members, friends and care giver.
        34. What other complications may arise?
        35. How will you monitor my disease?
        36. What is my PCR and how often will it be checked?

I know that some of these questions are probably ridiculous and not necessary and I know that there may be many others that I will either come up with at some point or have totally forgotten; so, if you have questions that you would like to add to the list…..Just let me know!

2 comments:

  1. Your blog "may" be saving lives Michele, "the questions" are part of the solution, no matter how annoying. IF your Dr. finds them annoying - it's the wrong Dr. - the Dr. "should" realize, you are asking questions regarding "YOUR LIFE" and the quality of it... You - looked until you found the "right fit" in a Dr., people SHOULD do that... Lessons learned from you, as you dance your way through this, hopefully is a God send for MANY people, patients and caregivers a like... Blessings to you, julia

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  2. Julia, you are always so kind and inspiring, not to mention encouraging! YOU bring so much joy to others and this "other" is thanking you!!
    Much love,
    Michele

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Bricks for the Brave!!