No DX....Anyone?
 

My mom went to see the doctor at Yale. They don't know what she has. He said it acts like AA but she really isn't Anemic and he doesn't really think it's MDS because ...(I don't know if I have this right) ...she has megakatytes (forgive my spelling) and she is not cellurlar or clonal? It could be ITP but the platelets are being attacked inside the bone marrow....it is definately auto immune but it is not cancer and it is only affecting her platelets. She is refractory and they will be starting her on HLA platelets. Anyone have any experience with these? Do they last longer and do they raise platelets a little higher? She is taking Amicar, Cyclosporine and Promacta. The doctor was very good and very informative but he didn't seem overly concerned. My mom doesn't have any bleeding and her platelets have been down to 7 and seem to always be at 9. Does anyone have any ideas? What does cellular, clonal and megakcytotes...(again, forgive the spelling)...thanks again for any info you can share.

Hi Grifmat,

You can always get some more eyes looking at your mom's situation - either Dana Farber or NIH. The treatments do take time to work, but this could be a productive thing to do during this difficult waiting period.

I will try debugging the doctor speak...

"not clonal" is good because sometimes these diseases can evolve to MDS or AML. Hers is stable.

"not cellular" or hypocellular means that her marrow is empty of blood cells. This is what you would see in AA or hypocellular MDS and is probably indicative of an immune attack. In traditional MDS, the marrow would be packed with too many cells. Here's an analogy...with MDS, the blood-cell- factory is broken and is producing too many deformed cells. With AA, someone is attacking the factory so that it can hardly produce any cells.

Megakaryocytes are the precursers to platelets. So, it is good if the doctor sees them and they are not abnormal in form (in which case he would have said that she has megakaryocytosis).

Be sure to get copies of all of your mom's BMB's and CBC's!

I hope the HLA matched platelets work for your mom!

Thank you hopeful. I was able to understand most of what the doctor was saying yesterday but these few things caught me off guard even thoughI was familiar with the terms...just wasn't sure how they pertained to my mom, so thank you, so much, for your help. She went for blood work today and last time she went she was at 7...they gave her platelets even though she is refractory and two days later she was at 14. We know that isn't good but it's encouraging...and it ain't 7. One day at a time:)

I'm happy for your mom. 14k is *so* much better than 7k! Maybe the medicines are starting to work as well???