Anyone had an MRI to evaluate treatment or distinguish AA from MDS?

[amykdb]

Hello-

Just wondering if anyone's doctor has used an MRI to evaluate response to treatment or distinguish MDS from AA. I read a few studies that indicate that this could be worthwhile. Apparently, an MRI is able to detect early clonal disease in patients with AA, and can distinguish AA from hypoplastic MDS.

Thanks!
Amy

[Ruth Cuadra]

Amy,

This is an interesting question. I don't think I know anyone who has ever had an MRI to evaluate treatment or distinguish AA from MDS. However, a brief google search shows there has been some research done in this area:

"MRI in the Detection of Malignant Infiltration of Bone Marrow" -- A Commentary

Usefulness of FDG-PET (Positron Emission Tomography) in the Discrimination between Hypoplastic Myelodysplastic Syndromes and Aplastic Anemia

Evidence for clonal disease by magnetic resonance imaging in patients with hypoplastic marrow disorders

Has your doctor recommended an MRI for you?

Regards,
Ruth Cuadra

[amykdb]

Hi Ruth-

My mom has a mixed MDS/AA diagnosis and also has unexplained chronic pain. Her neurologist performed an MRI of her brain and neck to see if he could determine a reason for the pain she is in. The MRI came back and he said he had never seen anything like it before. He noted "a lot of bone marrow activity" and recommended full bone scans as well, but he is deferring to her hematologist. I called her hematologist about this and he said, "We don't usually do MRIs of people with MDS." So, I started searching around the internet and found that some doctors found MRIs to be clinically significant in evaluating treatment and diagnosis. I hoped that maybe someone on this site might have experience with this so that I could bring it up in conversation with him.

Thanks,
Amy

[Ruth Cuadra]

Amy, I see now how you came to ask about MRIs for AA/MDS. Perhaps your mom's hematologist needs to consult with her neurologist--or at least see her prior MRI test results--to figure out what those test do tell about the state of her bone marrow. Seems to me a doctor would want to take advantage of any possible "insight" into a patient's condition. I hope you'll let us know how you're mom is doing from time to time.

Regards,
Ruth

[amykdb]

Hi Ruth-

We meet with her hematologist on 6/11. I am going to push for a different treatment; she's currently on aranesp--which apparently is used primarily in treatment with low-risk and intermediate-1. She falls into intermediate-2 and the aranesp doesn't seem to be working that well. It looks like maybe dacogen or vidaza would be a better course. I'll post again after her appt. and let everyone know how it's going.

Thanks to you and everyone that has responded to all of my questions. My thoughts and prayers are with all of you.

Amy
______________
Daughter of Judy, 65 years-old, DX 3/2009, mixed AA/MDS diagnosis; Int-2, multiple chromosome abnormalities, 2nd cycle of aranesp.

[Vera W]

Glad to hear that you have been doing your research! You know sometimes you are your best advocate! Keep pushing! Vera