New patient going on first doctor visit

[nancym]

Hi all.

I am the daughter of an elderly patient. Mom got the call from her doctor last night. I have a rare endocrine disorder and rely on my support group so I thought I would plug into the MDS group right away.

I have read the patient handbook from this site and have e-mailed it to family members. Mom has a doctor appointment next week to discuss MDS and her treatment options. We have yet to find out her subtype.

Briefly looking over the foundation information, I saw one individual strongly recommended finding board certified hematologist to manage MDS care. Should I push for this? Can you give me suggestions as to questions to ask the doctor at this initial visit?

Thanks,

Nancy in Illinois

[KingJohn1967]

Nancy,

Not sure where you are at in Illinois, but my dad who has MDS is treated by the Siteman Center in St Louis. they are terrific! He was first being treated by an Oncologist, and they were just giving him supportive care. Once at Siteman, they placed him on different treatments, and he was doing very well for 4 years. unfortunately, his disease has progressed to AML, and he started chemo on Monday at Siteman Center.

I would recommend going to a place which treats MDS patients if you can. They understand the disease, can discuss options, and have access to drug studies which others may not access.

John

[nancym]

Hi John.

Best wishes for your father’s care. I live in the suburbs near Chicago. How did you go about finding a facility that has more experience treating MDS? I found out today the diagnosing doctor is a Hematologist/Oncologist (according to Mom). I’m trying to get the time off to go to her appointment next week to talk to the Doctor.

Two more concerns I have are 1. Mom and Dad still live in their home of 50 years. How realistic is this when dealing with MDS? They both depend on each other…Mom cooks and Dad shovels snow (slowly), helps with cleaning etc. I don’t know how good my Dad will be as a care giver. 2. Generally speaking, what is the percentage of early MDS patient who progress to AML?

Thanks,

Nancy

[billboy]

Hi Nancy,

You can find a good place for MDS treatment just by going to the MDS Foundation home page (just click on the the MDS Foundation Inc at the top of this page and then click on MDS Centers of Excellence on the left). Scrolling down you’ll find at least three in the Chicago area. As far as their being able to remain in their own home, you’ll have to be the judge of that. You haven’t provided their ages. I’m 73 and have had MDS for four years and still do the same things, if a bit more slowly, as before even with two of my blood lines significantly below normal ranges. With regard to your question about progression to AML, see:

http://74.125.47.132/search?q=cache:k6t_xDD_MvcJ:www.neutropenia.ca/research/mds.html+mds+to+aml&cd=1&hl=en&ct=clnk&gl=us&client=firefox-a

This is perhaps more info than you wanted, but I think you’ll find it quite informative, nonetheless. Upon reading the article at this link you’ll see that the likelihood of progression to AML varies, depending on the type of MDS. Even then, I think most of us with an MDS diagnosis will die of some other cause due to comorbidities.

Hope this helps and that your mother responds well to treatment, if any is required.

[billboy]

Hi Nancy,

Sorry that I gave you a bad link. Try this one instead:

http://www.neutropenia.ca/research/mds.html

[nancym]

Thanks to all. I found all of your posts helpful. Mom goes to the doctor in a few days and now has a vocabulary and is already thinking about possible options.

Nancy

[Liz]

Does anyone still have the excellent list of questions Neil would supply for initial doctor visits? I looked in my back records and couldn’t find mine. Nancy, maybe someone still has a copy. He had compiled a list that made me feel I had some control over the doctor visit and the search for understanding.

Liz

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