questions

[Teresa]

My Mom is 76ys and has had MDS for 5yrs. We live in north central WYO. had have to travel to Omaha, NE 4x a yr to see a specialist. We have a good DR here that works well with the specialist. But it is hard to get blunt answers. Mom has tried all the latest drugs, unfortunately none of them have ever worked. She next neupogen 2x wkly and this month due to the flu has received 2 units of blood 3 wks in a row, but is on antibiotics and is responding well.

Can anyone give me an idea of what our future holds, since Mom has not responded to any medication. What happens when the transfusions become weekly, or her body rejects the transfusions.

I am my Moms main caregiver and try to keep up beat about the future but this last 3 wks has been hard. I don’t mean to be morbid, I just need to know what to expect. The Dr’s never want to talk about the future only the present and maybe thats all I need right now. I always tell Mom that she is doing better than most and has out lived the odds.

Its nice to read note from other MDS families. This is my first time logging on.

May God bless each and everyone and their loved ones.

Thanks

[patti]

Teresa,

My husband and I just looked at moving to Worland! I’ll have to PM you to ask some questions.

A lot depends on what type of MDS your mom has. Is she RA, RAEB, etc.? My MIL went 2.5yrs getting tx every 2-3 weeks. She had all 3 cell lines affected and quit using neupogen about 8 weeks ago because it had stopped working. She had also been on it twice a week.

It will be easier to be more specific if we know what type of MDS she has. What cell lines are affected?

I understand what you mean about wanting to know what’s coming down the pike. I was the same way and had a hard time getting anyone to answer (one person did privately). I do better knowing what the possibilities are then I do going blindly into something.

I can share more if you can throw in some more info.

Patti

[Neil]

Hi Teresa,
A friend, with Refractory Anemia was on TX for about 15 years. He had around 400 over that time.
He led a very “normal” life outside of the TX and chelation. He got irradiated/filtered packed red cells. Infused Desferal 5 nights a week. He started on the desferal before his ferritin got to 2000. He also took tylenol and benedryl before each TX to reduce the chance of a reaction.
He traveled internationally, was a very strong spokesperson for MDS and really led a very productive life inspite of his MDS.
Much depends upon her classification of MDS and her risk level. There are so many variables between patients. I have had MDS for 10 years. I lead a fairly normal life and only my close friends know I have it. I am careful to stay away from crowds, particularly during the winter, drive carefully, am very careful with power tools and do not fly unless necessary. The recirculated air is a bit of a risk during the flu season and my doc prefers I stay on the ground.
I follow a low carb low fat diet (am a type 2 diabetic), very little alcohol, get as much exercise as I can tolerate, take vitamin C, Vitamin B6, Garlic (my wife claims it helps sinus issues) and a multivitamin and get as much rest as I need. I took Procrit for almos 3 years before my doc switched me to Aranesp. They both made substantial changes in my energy level. Get 300 units every 3 weeks. It keeps my HGB in the 11.3 – 11.5 range.

[Teresa]

Thanks for the replys. My Mom is RA, she only has the red cells affected. Today was a good day her HGB was a 9.6 and she won’t have to have a transfusion this week. First time in three weeks. So that is nice. Dr. Maness in Omaha has said that she is at the low end of the MDS, and her bone marrow has not change in 2 yrs.

Currently, she is battling the flu. But seems to finnaly be getting enough fluids to help.

Thanks again

[Author]

Posts