What should I ask the dr

[Joseph Agustin]

I’m so confused about mds I’m
Not sure what pertinent questions I should ask of the dr. Does anyone have any suggestions, this is for my 65 year old father, I’m gojng with him wed to the dr to stop middle manning my parents

[Bob]

The Dr. should be able to give you a report of the Bone Marrow Test. You should be able to see the important blood test results and how they match-up with the norms. (Was it Hemoglobin at 5 or 4.3 – that is quite low.)

The Dr. should be able to tell you what kind of MDS you father has and at what level the MDS is, and what the specific treatment options are.

It is going to be a lot of information particularly since you are not used to thinking about MDS. It is a difficult but important first step. There are people here and at Marrow Forums ( http://www.marrowforums.org/ ) who have dealt with the worst MDS has to offer.

Try to avoid looking up things related to MDS that are more than ten years old. Things have certainly changed in ten years and much of that information is not current.

Please share where you are located and what hospital your father is going to and to by all means get to a Center of Excellence. That’s where the specialists are.

[Joseph Agustin]

Yes hemaglobin levels before first transfusion were 5, a month later they are 4.3

[Sherry Pratt]

Location of hospital? Is the doctor a specialist in blood cancers or does he work with all types of cancer? What is his first course of action based on the bone marrow biopsy reports. I am a FIRM believer in 2/3 opinions, and at least one of those should be from a center of excellence.

[Anonymous]

Here is a list of questions to ask after getting the MDS diagnosis.
Questions to ask after getting a diagnosis
• What subtype of MDS do I have?
• What risk group am I in? What does this mean?
• Can you explain my pathology report (laboratory test results) to me?
• What is my prognosis?
• How do I find a doctor who specializes in the treatment of MDS?
Questions to ask about choosing a treatment and managing side effects
• What are my treatment options?
• Do I need to start treatment right away?
• Who will be part of my health care team, and what does each member do?
• Who will be coordinating my overall treatment?
• What are clinical trials open to me? Where are they located, and how do I find out more about them?
• What treatment plan do you recommend? Why?
• What is the goal of each treatment? Is it to eliminate the MDS, manage my symptoms, or both?
• How often will I need to be treated, and for how long will I receive treatment?
• Will treatment be given in the hospital, or can it be given at the doctor’s office or clinic?
• Do I need someone to come with me when I get my treatment?
• What are the possible side-effects of this treatment, both in the short term and the long term?
• How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
• Could this treatment affect my sex life? If so, how and for how long?
• Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?
• If I’m worried about managing the costs related to my medical care, who can help me with these concerns?
• What follow-up tests will I need, and how often will I need them?
• What are support services available to me? To my family?
• Is there concern about this disease occurring in other members of my family?
• Whom should I call for questions or problems?
• Is there anything else I should be asking?
Questions to ask about having chemotherapy, immunotherapy, or a stem cell transplant
• What type of treatment is recommended?
• What is the goal of this treatment?
• How long will it take to give this treatment?
• What side effects can I expect during treatment?
• What are the possible long-term effects of having this treatment?
• What can be done to relieve the side effects?
Questions to ask about planning follow-up care
• What is the risk of the MDS returning? Are there signs and symptoms I should watch for?
• What long-term side effects or late effects are possible based on the treatment I received?
• What follow-up tests will I need, and how often will I need them?
• How do I get a treatment summary and survivorship care plan to keep in my personal records?
• Who will be coordinating my follow-up care?
• What are survivorship support services available to me? To my family?

[Wendy Brizer-Maciol]

This is a wonderful list, which I wish we had when my dad was diagnosed.

[Author]

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