Strange MDS/MDS Unclassified

[Brendonn97]

Hi everyone, this is my first time posting on this forum. I haven’t filled out a signature just yet as well, I still don’t really know where things are. My dad, who is 55 years old, started getting sick around last May. His first symptoms were severe fatigue, weight loss, headaches, and fevers. After spending 3 days under exam at our hospital, it was discovered that he had severe anemia (RBC of around 4.5). Ever since we have been on a roller coaster of different possible diseases and symptoms and have yet to acquire a confirmed diagnosis. He was initially transfusion dependent, requiring weekly transfusions just to get his RBC to 7 or 8. They would quickly drop, and he went through every test imaginable. His colonoscopy, endoscopy, CT-scans, everything came back normal. My first thought was either a stomach ulcer or Crohn’s...but that was ultimately eliminated as a possible culprit. He ended up receiving 2 bone marrow biopsies, the first of which was a dry tap but yielded no abnormalities and a second one that attained copious amounts of fluid and yet again no abnormalities. He has been receiving Procrit weekly and now only requires transfusions once every 2 months or so...with his RBC stable at between 7.5-9.5. I feel completely in the dark, as does he. His hematologist/oncologist is treating this as MDS, but has not given a confirmed diagnosis. “It’s acting like MDS” is all he really has to say. We are going to Dana Farber for a second opinion on the 19th. It’s just incredibly bizarre to me that he has nearly every symptom of MDS, yet his bone marrow is completely normal...no dysplasia...no blasts...just normal. His doctors are just as utterly perplexed. What also concerns me is his fevers. He gets low grade fevers twice a week that last a day or so and quickly go away with Tylenol. He has seen an infectious disease doctor and has had cultures and blood tests galore all to no avail...it seems absolutely everything is completely normal aside from the fact that his body is not producing red blood cells. It’s possible that his next bone marrow biopsy could reveal more at Dana Farber...but it still just doesn’t make sense to me. Has anybody ever heard of something like this? Is it normal to have weekly fevers? Thank you so much for reading and any feedback would be so greatly appreciated...I admire each and every one of you.

[Sally C]

Hi Brenndon97,
After the hematology experts in our city were unable to get a firm diagnosis for my husband in 2009, we went to The NIH in Bethesda, Md. to get the diagnosis of MDS. His illness came on like AA but presented more like MDS. It was a year and a half later before his marrow clearly showed MDS.
I know this doesn't help with your Dad's diagnosis. I thought it might help you to know that individual cases of marrow disorders seem to have their own characteristics.
All the best to you and your Dad.
Sally

[Brendonn97]

Originally Posted by Sally C

Hi Brenndon97,
After the hematology experts in our city were unable to get a firm diagnosis for my husband in 2009, we went to The NIH in Bethesda, Md. to get the diagnosis of MDS. His illness came on like AA but presented more like MDS. It was a year and a half later before his marrow clearly showed MDS.
I know this doesn't help with your Dad's diagnosis. I thought it might help you to know that individual cases of marrow disorders seem to have their own characteristics.
All the best to you and your Dad.
Sally

Thank you for your reply. I hope that your husband is doing well. It’s just strange. His has every MDS symptom and his body isn’t producing red blood cells but his bone marrow is textbook. I’m just scared once he gets the next one at Farber that it’ll show something drastic. AML is my biggest fear. The fevers scare me the most, but I guess they can just happen for some people.

[Neil Cuadra]

I got some information about this type of case from Leigh Clark, a Patient Educator at the Aplastic Anemia & MDS International Foundation.

About 1 to 2% of MDS patients are classified as MDS-U (MDS unclassified). These patients have decreased numbers of white blood cells, red blood cells, or platelets, but do not have the specific signs of the other MDS subtypes. The bone marrow may show unusual features such as scarring (fibrosis).

I'm glad you are getting a second opinion, which may shed more light on it. If it's not MDS, there are other bone marrow failure diseases, including other types of anemia, that the doctors at Dana Farber may consider.

After your appointment, please let us know what they said.

[Richard Lin]

Agree that this sounds like something in the spectrum of bone marrow failure syndrome. A good bmbx with molecular testing may be the key at Dana Farber. If needed, I can help arrange another consultation at the Memorial Sloan Kettering Cancer Center.