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[Bond Girl]

HI, I stumbled across this forum while researching info on MDS. My husband was diagnosed with MDS this Monday after several Bone Marrow Biopsies. He is 39 years old. We are still processing this information and what it means for our family. We have a 7 month old, a 3 year old and 4 year old. I wasnt able to go to his Dr's appointment as I had work obligations. We are still trying to understand all the information the Dr provided, his pages of lab results and everything we are reading online.

At this point all I know is his blasts are at 4%. He will have monthly blood work at the local oncologist and then have to drive to Atlanta every 3 months to meet with the Oncologist there. His dr is looking at enrolling him in a trial.

[bailie]

Bond Girl, welcome to the forum. There is a wealth of information in the archives here. There are many different MDS diagnosis. Have the doctors label his diagnosis yet? Education is an important friend for you so learn all you can.

[Neil Cuadra]

Bond Girl,

I suggest that you visit the Aplastic Anemia & MDS International Foundation website, contact them, and/or get their MDS information packet. You should also download the Bone Marrow Handbook from the MDS Foundation. Both organizations provide excellent overviews of the forms of MDS, and details about what it means for you and your husband.

Try to clear your schedule so you can attend future doctor's appointments with your husband. I suggest enlisting friends and relatives to help with the kids. Not only will that let one of you take notes while the other asks questions, but your husband will benefit from you being there for support. It's a lot to absorb, and I'm sure you're still shocked at his diagnosis. Doctors sometimes speak quickly and throw in medical terms that you're not familiar with, but meeting the doctor halfway by learning more about MDS will help.

If 4% is the blast count in your husband's bone marrow, then it's presumably in the OK range. MDS is classified into subtypes (you should ask which subtype his has), and the risk goes up when the blast count is over 5%.

We can help if you want to ask about the numbers on his CBC (complete blood count) lab results. You should collect his blood test results so you can spot changes over time. The disease is invisible, inside the bone marrow, but the symptoms of low blood counts are what affect the way you feel.

There's also a lab report on each bone marrow biopsy, but those are hard for us laypersons to interpret. It's best to ask the doctor to explain what the findings mean.

There are pros and cons to clinical trials. You should know which trial the doctor is looking at and what the tradeoffs are versus other types of treatment.

[Hopeful]

Hi Bond Girl,

What has led them to an MDS diagnosis vs Aplastic Anemia or something else? Does he have cytogenetic abnormalities? Is his Atlanta oncologist an *expert* in bone marrow diseases? Have they run tons of tests on him to rule out other causes? These diseases are rare. Be certain of the diagnosis before beginning any treatment.

[Sue&Dave]

Bond Girl - I echo exactly what Neil said in terms of enlisting family and friends and attending his doctor appointments. It becomes totally overwhelming to digest the information, and do not be afraid to ask a doctor to explain something again, by saying "I don't understand". Many times they use terms that are unfamiliar to lay people, but it can be re-phrased in an understandable way. Also, we bring a small digital recorder with us to each appointment and have found it invaluable to review the discussion at a later date, take notes for future appointments (or even send a follow up email) and to share with our children so they are aware of the complexities of the disease and his treatment. You can purchase one for under $75. Of course, courtesy dictates that you ask the doctor if he/she minds if you record. As a matter of fact, I forgot to take mine out at one of our recent appointments and when I started getting overwhelmed with the information asked the doctor if I could record, and she kindly started all over so I would have the entire conversation taped.

[Bond Girl]

Thanks everyone who responded. My husband and I have had more time to process the news and do more research. Im starting to understand his paperwork a little better. He was diagnosed with MDS-unspecified.

The way he was diagnosed with MDS was during a routine blood work for his arthritis. He was diagnosed with Ankylosing Spondilitis about a year ago. The blood work showed that his white blood cell count was low. They took him off his medications and after a couple months, his white cells were still low. They never increased like they should have. He was sent for a Bone Marrow Biopsy and more blood work. The first biopsy came back inconclusive and that his WBC were still low. He was referred to a DR at a bigger hospital in the city who specializes in Luekemia, Lymphoma and MDS. He did more blood work a couple months later and another Biopsy and that is when the pathology came back with MDS. He has a mutation on chromosome 7 & 8. The pathology also came back with low platelet count and blasts at 4%.

I appreciate your advise and will do what I can to make his dr appointments.

[Deborah52]

I hope things are settling down for you and your family and the information is getting easier to navigate and interpret. As an MDS patient I would second others' recommendations making a recording of doctors' appointments. Depending on my blood levels at any moment, my cognitive abilities fluctuate wildly. Treatment related "chemo brain", memory loss, etc are another wild card in the mix. I don't necessarily process or retain much of the information I receive at my doctor appointments. I always go with a list but may have trouble focusing on the entire answer at that time My husband is able to go to all of my appointments with me but we can hear different things sitting side by side! Our abilities to interpret certain parts of the info are very different as well. It is great to have a recording to refer to when better circumstances may allow us or family members to review everything that was said. We just record on our mobile phones and save the file. I haven't run across any objections yet. That also makes it less critical that you attend every appointment. FaceTime can also allow you to be present remotely. Good luck to you! Deborah