Hi @sgt, I’m grateful @sueinmn brought me into this conversation. Oh gosh, believe me, I know what it’s like to get a diagnosis of a blood cancer. It fills us with terror! While I didn’t have the same ‘flavor’ of disease as your Myeloid dysplastic syndrome, I did have a very aggressive form of Acute Myeloid Leukemia. That was over 3 years ago and I’m alive and kicking! So let’s work some magic in your day and give you some hope!

Your specialist, whom I’m guessing is a hematologist/oncologist hasn’t told you anything about your disease? I’m sorry you’re not getting the feedback you need to hear to help you get a better understanding of what’s going on.
I don’t want you to live in fear. As Sue mentioned, it is not curable…as such. That sounds frightening, I know. But it’s usually a slowly developing disease and is often manageable with treating the symptoms. There are several types of MDS depending which cells are involved. Red cells, white blood cells or platelets. So if you’re finding that your platelets are down and you’re experiencing a slower clotting time than normal, there may be a platelet infusion from time to time.
Anemia is another aspect if your red cells are low and you’re feeling fatigued. There might be a blood transfusion offered to bring that level back up.

There are also medications which can help slow the progression of the disease. Ultimately, there is the outside possibility of a bone marrow transplant. My very good friend had a stem cell transplant 3 years ago for her MDS (that she had for many years) and her transplant doctor feels she is in a lasting remission from the disease. So there is hope and this is all doable.
It sounds like you’re pretty early in the discovery. Has your doctor not spoken to you about any of these options?

Telling your children is most important. You can not and do not need to go through this alone without some emotional support. My husband didn’t want to tell our, at the time, 35 year old daughter. But called her right away and we’re so glad we did! Our daughter was amazing through all of my journey. I don’t know the age of your children but if they’re grown adults they will surprise you at how well they rise to the occasion. Face this head on with them. You’ll feel a whole lot better getting this out in the open! And of course, now that you’ve joined us in Connect, you just acquired another family. ☺️
How often do you have bloodwork done?

Jump to this post