What will be next...

[disneydad]

As I explained in my other post, it appears that my moms disease is progressing. Since being diagnosed two years ago, her symptoms have been limited to feeling tired between transfusions. If she is progressing what can we expect? What happens to patients with MDS as the disease progresses?
Will it be painful for her? What causes of death are common for MDS patients?
I guess i'm feeling scared.

[DanL]

Disneydad,

I am sorry to hear of your mother's condition. This is a disease that has not received enough attention and a lot of the information available is rather old.

In a nutshell, when MDS progresses, it progresses in a couple of ways.

1) progressive cytopenias - meaning that the blood counts start to get worse in all three blood lines, or the severity of transfusion need increases substantially.

2) conversion from mds to aml - basically the bone marrow is producing too few good blood cells and a lot of immature blood cells resulting in the aforementioned cytopenias. The immature cells are called blasts.

Aside from other existing illnesses or health conditions, the two most common causes of MDS related death are infections due to low white blood counts and bleeding (internal or external) due to severely low platelet counts. Sometimes the low blood counts can cause additional stress on the body and affect other internal organs if left unattended too long, which is why it is key to keep on top of her blood counts.

As for the suffering, other than the stress of dealing with a disease that does not have a sure-fire cure, I don't experience any disease related pain or suffering. I think some others in the forum may be able to provide more insight, but so far as I have experienced, the disease itself is not directly resposnible for physical discomfort.

I wish you and your mom well.

[bebop]

I think everyone like this disease is different. My dad's dr told us he could either have a major bleed or infection or he would just go to sleep. Neither of those happened to him thank goodness. He grew very weak and transfusions no longer worked for him so they were stopped. He gradually stopped eating and drinking for the most part. His transfusions were stopped on April 5 and he passed May 3. He had no pain to speak of until Saturday before he passed on Tuesday. I will be happy to talk to you about it.

[disneydad]

Originally Posted by bebop

I think everyone like this disease is different. My dad's dr told us he could either have a major bleed or infection or he would just go to sleep. Neither of those happened to him thank goodness. He grew very weak and transfusions no longer worked for him so they were stopped. He gradually stopped eating and drinking for the most part. His transfusions were stopped on April 5 and he passed May 3. He had no pain to speak of until Saturday before he passed on Tuesday. I will be happy to talk to you about it.

Thanks. My mom has been receiving transfusions avery two weeks for a few months now and she needed one much sooner this time. This is also the first time that there were blasts in her blood. I cant escapr the feeling that this is the beginning of the end. At what point do they stop the transfusions?

[bebop]

Dad had blood every couple of weeks for quite a while then went to every week. Then his platelets went way down and had to have 4 units a week and honestly it wasn't enough. not sure they looked for blasts in his weekly blood test but it certainly can show up there. The won't stop them unless she wants to stop or they just don't work anymore.