Need to know more - Mom has MDS

[junglegirlsue]

Hello! My Mom was diagnosed with MDS this week. She is 73 and hers came from chemo from breast cancer treatment 10 years ago. She is low in red blood cells and has excess blasts. They are going to keep her going with transfusions. I have a couple of questions.

Can you do anything to make the transfusions last longer? She is very active. Would it help it she cut back on her activities? What about excercise? The dr said ok if you want to. My position is save your energy for what you really want to do like play bridge and leave the housework and chores to me. Sounds like paradise to me but makes her mad. She thinks I am babying her too much.

Also the doctor said iron problems won't hapen until 100 transfusions. The literature from the MDS foundation says it is around 24. Has anyone had problems with this?

My son and I live with my Mom. We love her and want her around for years to come. I would love to hear advice from people who have lived with this for years. Thanks!

[Joan]

Dear Junglegirlsue;

My husband was diagnosed with MDS two years ago when he was 75. His MDS also caused from chemo treatments he received 15 years earlier. You can read abou it under My Story.

Anyway, he has been treated primarily with Aranesp or Eprogen/Procrit depending on insurance coverage. He has had only 6 units of blood in the past two years. His HGB has gotten as low as 8.5 and is now at 9.5. He has less energy but still manages to walk 2 to 3 miles every day. It isn't a fun disease but Don is getting along reasonably well. Some days are better than others.

Take care. Hopefully you can have her around for several more years.

Joan

[slrb2152]

Originally Posted by junglegirlsue

Hello! My Mom was diagnosed with MDS this week. She is 73 and hers came from chemo from breast cancer treatment 10 years ago. She is low in red blood cells and has excess blasts. They are going to keep her going with transfusions. I have a couple of questions.

Can you do anything to make the transfusions last longer? She is very active. Would it help it she cut back on her activities? What about excercise? The dr said ok if you want to. My position is save your energy for what you really want to do like play bridge and leave the housework and chores to me. Sounds like paradise to me but makes her mad. She thinks I am babying her too much.

Also the doctor said iron problems won't hapen until 100 transfusions. The literature from the MDS foundation says it is around 24. Has anyone had problems with this?

My son and I live with my Mom. We love her and want her around for years to come. I would love to hear advice from people who have lived with this for years. Thanks!

Hello and welcome,

I have just joined this group recently, too. I was thrilled and relieved to find this forum. I have found everyone to be very nice and extremely helpful.

There are several of us on this list now with parents who have MDS.
My Mother, 79, has MDS-RARS. It is refractory from chemo for lymphoma a few years back. She is taking Aranesp shots every two weeks. Her bloodwork is improving each 2 week check VERY slightly but we are still thankful. She has been extremely weak and fatigued but the past 3-4 days, she has felt somewhat better. Again, we are thankful. I have no experience with transfusions but I know there are those on this list who will be answering your questions.

You will find much info here both in recent posts as well as in the archives. There is alot to learn about this disease and while there is info on the net, the great thing about this site is you are hearing from people who are experiencing it all first hand. They give me hope and we all need that!
I do hope your Mother will do well with her treatments and have many more years with you and your family.
Sharon

[Ruth Cuadra]

Hi, junglegirlsue.

Welcome to Marrowforums. As you can see from Joan's and Sharon's posts there are a lot of people here who are caring for parents with MDS.

There are some things you and/or your mother can do to try to make her transfusions last longer. You can read the discussion about the "freshness" of blood products, but the main point is that her doctor should always order the freshest blood possible--that is, blood that has the most time left before its expiration date.

Activity does not generally affect how long a transfusion will last. She won't use up her blood cells by exercising or continuing whatever activities she's doing. As long as she knows to stop when she feels short of breath, dizzy, or faint, I would encourage her to keep doing what she's doing to maintain her mental health.

The current wisdom is that patients should worry about iron overload after about 20 transfusions. Waiting for 100 transfusions will be too late. You can read through the threads in our Transfusions and Iron Overload forum to see what's being said on this topic.

If you haven't already, contact the Aplastic Anemia & MDS International Foundation and ask for their packet on MDS plus information about iron overload. There's lots to learn about MDS and these materials will help you get a firm grounding in all the medical jargon and important issues to consider.

Let us know what questions you have. We're all here to help.

Regards,
Ruth Cuadra

[Tom M]

I had iron overload after only 12 transfusions, but I also have an underlying blood disorder called beta thalasemia, which adds to my iron problems. As Ruth said, don't wait for transfusion #100.