I just found out yesterday that I have melody spastic syndrome.
I am in the slow - mid range.doing nothing, they say I have 5 years. The Dr. The had this example: if you have 6 Kathy's that do nothing. Half will pass away in those 5 years.
The other half? Who knows.

The doctor said I could wait a bit. I told him that having the Brca2 mutation and the TP53 mutation I do not feel confident I would be here past 5 years.
I already have a donor tested who is o type blood, a 25 year old male and a perfect match. COH is contacting the donor center to see if April is possible.
For sure my hair is still at my shoulders and I am 1 year off my perjeta/herception infusions and nearly 8 months from my Lynparza.
Chemo infusions in late 2021 for breast cancer. I think now is best as I do not have MDS yet. I will if I do nothing.
On the fun side, I was a platelet donor at the Red Cross for 25 years with A+ blood. Now, I will get platelets again from a donor and after my transplant I will have 0 blood. No more A in my body if all goes right.

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