Marrowforums - Tomorrow is my dads 2nd consultation

Bob,

You're doing the right thing by reading about MDS, looking for information that can help your dad, and asking questions.

You'll learn a lot of new words and names of tests, drugs, and treatments. We all started out fairly confused but learned some of the main terminology as we went along, so we could work with the doctors, understand most of what's going on, and explain it to others.

What to expect...

More tests and more new words to learn.

Your dad may actually feel fine and wonder what all the fuss is about. Unless blood counts are very low, MDS patients may not even feel anything wrong and doctors may begin with a conservative "wait and watch" approach. But MDS-Intermediate-2 is toward the higher risk side of the scale and is usually treated. Since the doctor mentioned a harsh treatment, then backed off it a bit, wait and watch probably won't be the approach for your dad.

If he starts on a drug treatment he may feel worse before he feels better. Those drugs tend to knock you back, often lowering your blood counts, before they start having the desired effect. It can take months to get good results and it's hard to be patient for so long.

The hospital may check whether there are any matched donors in your family or in the national bone marrow registry in case a bone marrow transplant is one of the treatment choices.

What to ask the doctor...

You might pick questions from this list at the Aplastic Anemia and MDS International Foundation website.

The focus of consultations with the doctor should be to outline your dad's options (drug treatment with Vidaza being one of them) and learn what the tradeoffs among them are so you, your dad, and the doctor can agree on a plan.

When I go to doctor's appointments with my wife we think of questions we want to ask ahead of time and write them down. During the appointment she asks questions and I take notes. There's no way we could memorize everything the doctor says, even in a 10-minute appointment.

Don't be shy about asking the doctor to explain things. You can't have tons of the doctor's time but if you have a specific list of questions and show it to them they usually take the time to go through them. If you don't understand the answer, say so.

What to keep track of...

I'd keep track of notes from appointments and get copies of each of your dad's CBC tests so you can see whether his blood counts are stable, rising, or dropping.

You can get a copy of the lab results from the test called a bone marrow biopsy and aspiration, but you probably won't be able to make sense of the report's medical terminology and abbreviations. You can ask the doctor to interpret it for you, rather than try to translate the whole lab report into layman's English. I think the best approach for someone new to the disease is to let the doctor summarize because it's the big picture that counts.

Don't let them tell you that medical test results are for the doctors, not for you. They belong to your dad and he has rights to copies of all of them. Most doctors and hospitals are enlightened about that these days, but there are still some that give you a hard time at first.

In addition to asking questions, make sure the doctor knows your dad's complete medical history and any related diseases among family members. MDS is almost always acquired, not inherited, but you want to cover all bases. The doctor should know all medicines your dad takes, prescription or over-the-counter, "mainstream" or "alternative".

How to help your dad...

Be part of his medical decision-making team. Be part of his support team and cheering section. Depending on which of you is best at learning or has any previous experience with doctors, hospitals, and medical services and lingo, help him understand what you learn and learn from what he already knows.

Listen to your father. He may have opinions about his health and what kind of treatment he'll accept or favor. His highest concerns may not be your highest concerns. Perhaps you're worried about whether the test next week will hurt and he's more interested in knowing whether he'll be able to travel later this year.

Be your father's friend and also his son. Simply being listened to or having family around is often all that's needed to lift spirits. It's harder than it sounds to be a medical tour guide when you're new to all this yourself, and to switch roles with a parent who previously took care of you, but parents with MDS very often rely on their adult children for a lot of help.

If you have other family members who can share this burden, enlist them. So often one family member takes the lead and everyone else steps back because they think they know less or have less time to contribute. But a bigger team will make coping easier and put less hardship on a single person. Ask others to help, explain what's going on to them, and give them specific roles or tasks if they're unsure what to do. Or let them take the lead and ask them how you can help.

Feeling powerless...

I think this happens to us because we don't know where MDS came from, what it's doing to our loved one, and what to do about it.

As it turns out, the first of those questions (how did your dad get MDS) usually can't be answered, except in cases of known exposure to toxic chemicals like benzene or prior chemotherapy. As it turns out, the answer usually doesn't matter for the future, so learn to let it go.

You can learn what MDS is doing to your dad by reading up on the specifics of the disease from resources like this educational packet and this large PDF, as well as what you read here at Marrowforums.

You find out what to do about the MDS by working with the medical team to identify the choices, weigh the options, and make joint decisions.

Good luck, Bob!