Newly diagnosed as of 3/30/2011
 

Hi everyone,

I am 44 and newly diagnosed with MDS.

My CT scan is schedled for Tuesday and I have an appointment with a MDS specialist at Dana Farber in two weeks.

I'm still new to all of this so any feedback on good questions to ask would be very welcome.

No idea what class of MDS I have. Didn't even know there were different classes till yesterday.

Likewise, I don't know what my levels are at either.

Basically, just don't know.

The only thing I can be sure of is that 9 of my chromosome pairs are damaged.

Any insight you may have would be very welcome.

Thanks,
Andy

welcome Andy
 

Welcome to a very friendly and helpful group.

There are some informational materials available through this group (starting with http://www.marrowforums.org/mds.htmland also the AAMDS Organization that would be helpful to read before going to the specialist.

It would also be helpful to have possession of copies of test results and also the doctor's chart notes which should explain the diagnosis. If you have results of chromosomal tests, a bone marrow biopsy was probably done on you as well(?). If so, be sure to get copies of those reports too, and read them over. All this information will help you create questions specific to your disorder.

I personally believe this is one of those diseases where it is the patient's interest to be as well educated as possible.

There's a steep learning curve, well worth it. In the front end, it seems like too much information to digest, but eventually we all start talking like hematologists!

Andy,

Asking if MDS has been confirmed, and for a more specific diagnosis is certainly a starting point. You could also ask if your MDS has been scored under one of the classification systems and where you fall on the scale. Those are broad categories but they usually influence the decision-making about treatment.

The most important question is what the doctor recommends, e.g., a wait-and-watch approach, transfusions, drug treatments, or something else. I'm sure you'll want to know not just the recommendation but why the doctor favors it compared to other choices.

Patients can't be blamed for wanting a specific prognosis and to know just what to expect, but the doctors can't tell you with certainty. What they know is based on the statistics across many patients but MDS is a complicated set of diseases so every case is individual.

I suggest that you ask the doctor about anything he or she says that you don't understand, even if you have to interrupt. We're all tempted to nod our heads when the doctors explanations are above our heads, but you'll both benefit if you ask for clarifications that will put you more in sync and make you and your doctor a team. The best doctors prefer a conversation to a lecture.

If you'll need treatment, you'll want to know what kind, how it's administered, when you'll start, what the risks or common side effects are, etc.

What's most important is that you ask the questions that are on your mind, because everyone comes at it from their own perspective. It helps a lot if you write a list of your question ahead of time. Otherwise it's easy to forget. If someone else can come with you to the appointment, they could take notes or help you go down your checklist. Here is a set of questions that the Aplastic Anemia & MDS International Foundation gives as an example.

It won't be the last appointment so you'll have further chances to learn and ask questions, but I hope your first appointment goes well and gives you assurance that you're in the right hands.

Andy, have you had a Bone Marrow Biopsy? Not sure how they can say you have chromosome damage without one. 9 chromosome damaged pairs seems like an awful lot, usually it's one or two. Interesting.

I really appreciate the feedback and the links.

Will definitely do some more research but everyone's suggestions were great.

I re-read the lab report from my bone-marrow test and it looks like I misunderstood nine for number 9..

The CT scan is today with the results likely given next week during my last visit.

As everyone says, there is a lot to absorb and everyone's case is different so I will try and be patient.

A friend of mine suggested creating a notebook for all the questions/answers. Probably a good idea.

Thanks everyone for your help on this.

I really appreciate this.

I would also be interested in the results of your CT scan. I've never heard of a CT scan being used for a bone marrow failure. Not sure what they will find from that test. Usually they just go by the CBCs and BMBs. Thanks