Mom and MDS

[maria&lola]

Just a note to say hello...

My mom has renal failure coupled with MDS, diagnosed this past December. The kidney disease masked the underlying MDS since anemia is a common side-effect. She was taking some pretty high doses of EPO and her RBC was consistently low but holding. When her counts took a dive requiring a transfusion, we knew we need to go for a follow-up with the hematologist but put it off a while longer. Then she needed another, and another...each time coming closer and closer together than the previous. A bone marrow biopsy gave us the MDS diagnosis and at least, a course of action.

She started treatment with Revlimid which turned out to be a total disaster for her. Likely because she needed to be backed down off the dose due to her kidney clearance. Unfortunately, the toxicity built up over the course of a month or so and made her quite ill, practically wiping out her marrow. She was transfusing and at the doctor's office every few days and we had to wait for the drug to clear her system, again taking longer due to the kidney disease. In theory, we could have gone back to it at a reduced-dose, but due to the bad reaction we decided to try a different tact. She started Dacogen infusions last week.

I try to keep calm and hold it together, but recently I'm swinging all over the place emotionally. I have a toddler and 7-month old and full-time job and I'm trying to juggle it all and be there for my mom at the same time. She lives with us, but she's pretty independent so it's not like I'm monitoring her constantly. I'm glad I can tell when she's starting to exhibit symptoms or I need to prod her to seek further attention. She tends to downplay her condition, either because she doesn't want to burden me or because she's simply tired of all the doctor's visits and the never ending needling.

Ugh! Anyway, I've stumbled across this forum more than once in my internet travels so thought I'd make it official and join the community.

Thanks for ready and for sharing your stories. God bless you!