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zatstone,
It's hard to talk about but it's a perfectly valid question.
People don't die directly from MDS but from complications caused by the symptoms and effects of MDS, particularly low blood counts. What happens in the final stages depends on which types of blood cells an MDS patient is lacking, just how low their counts are, and other factors such as their general health, since MDS can exacerbate other health problems. Without enough red cells (anemia) a patient may suffer congestive heart failure. With a very low platelet count (thrombocytopenia) a patient may die from bleeding into the brain or intestines. Patients with a very low white cell count (neutropenia) are often in the most danger because they are subject to infections and may succumb to pneumonia or other bacterial or fungal infections. Because patients may have to fight the battle on multiple fronts, developing problems with more than one organ or body system, this can gradually make them too weak for further treatment.
Measures can be taken to keep patients comfortable when it's clear that the end is coming. Transfusions can be continued as long as they are effective. Pain can be controlled, although those on higher doses of pain medication may be "out of it" much of the time. Patients may be able to go home on hospice care and may simply go to sleep and not wake up.
Patients can also experience serious side effects from MDS treatments. You can look them up for each drug. When to take, continue to take, or stop chemo treatments can be a very hard decision because it trades one set of risks for another set of risks, and it affects quality of life.
This information is based on what I've read and what I've heard from others. It would be nice if someone with a medical background could confirm this or provide more details!
Living as full a life as possible is a wonderful goal, and knowing what you are up against is important. I think that patients should take reasonable precautions to protect their health but that they should also continue to live their lives. Even thought an MDS patient will usually have to scale back what they do, they shouldn't give up on doing what makes them who they are. And since none of us knows how long we have left, we should all take full advantage of the time we have and concentrate on what's most important.
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