Forum Replies Created
-
AuthorPosts
-
Sue
ParticipantHi Hillary,
First, I’m sorry to hear that both your parents have passed. That’s tough. Gentle hugs. ❤️It has been explained to me that (and I’m not sure there is a definitive answer) MDS is familial meaning it runs in families but it’s not inherited. Maybe others here will offer better info.
In my case, my grandmother died of multiple myeloma, my dad from bone cancer, I have a cousin who survived AML and then there is me with MDS.
BUT I also read that with the all the breakthroughs in genetics some are leaning towards their being a genetic link. (See article below in link)I would talk with your primary care physician about your concerns and maybe they can steer you in the right direction.
SueParticipantHi!
In 2000 I was diagnosed with a Myeloproliferative Neoplasm called Essential Thrombocythemia, basically my platelets over proliferated. I knew their might come a day where my bone marrow would fail but I lasted longer than anyone expected. I was on Hydroxyurea for 13 years until my platelets stabilized. For five years I was treatment free until 2018. A routine blood test showed blasts. I was diagnosed with Low Risk MDS, watch and wait.
In Jan 2020, I sought a second opinion. A repeat marrow biopsy showed progression of disease with 10% blasts, ALIP 10%, del 5q, 44XX, -3, t(3:21), dr21 and NGS showing JAK V617F (41% VAF) and two TP53 mutations.
I was started on Vidaza and Venclexta and continued treatment for six months. On August 1, 2020, I entered the hospital and on August 6th, 2020 I had a transplant. I am now just a bit over one year post transplant with no sign of disease and zero genetic mutations.
ParticipantWhen I was diagnosed, I was originally watch and wait. My blasts were at 3%.
Within a year my blasts jumped to 11% and I was suddenly high risk.
They started Vidaza and Venclexta for 6 months to get my blasts down then I had a transplant.
I was 63 at the time of transplant. That was one year ago this month.August 28, 2021 at 11:26 am in reply to: Are MDS Patients considered “immunocompromised” for booster purposes? #54872ParticipantThere is some excellent info here.
-
AuthorPosts
