MDS Kills

[ejoegrayc]

My grandpa passed today. He has battled MDS for the past year. He was eighty years old. He had consistent low red blood cell counts and had to get transfusions once to twice a week. He started treatment with Vidaza, when that did not work we went to Revlimed. This too did not work. Both medications really took a toll on his body. His appetite decreased, he was constantly nauseous and grew weaker week to week. His quality of life decreased when on these medications, he was unable to do daily life activities as he once had been pretty active at his age. The treatments gave us roller coaster results, one week he would be a little better and have less transfusions a week, the next week he would be extremely weak and go in for two transfusions that week. He spent the last few weeks of his life in the hospital. He got an infection through his port, luckily a nurse caught the infection. They gave him several antibiotics. His body really struggled and weakened from fighting this infection. At this time his kidneys and liver were starting to shut down slowly.

The moral of this story........

If your loved one is older, consider their quality of life. If my family could redo it all, we would have just managed his disease instead of treating it. The drugs really took away his quality of life and could have possibly took him from us sooner. Also, if you are diagnosed with a serious illness take care of your living will, power of attorney and get things in order for your loved ones ahead of time. I will really miss my grandpa, he put up one hell of a fight. Seeing him suffer was one of the hardest experiences in my life and I am glad he is finally at peace.....

[Neil Cuadra]

ejoegrayc,

I've sorry to hear that you lost your grandpa, and also how you lost your grandpa, with regrets about the decision to use aggressive treatments instead of supportive care.

It must have been very hard to write your post here on the very same day he passed. I don't think I would be strong enough to write about it as you have.

I hope other families and patients will keep what you've said in mind. For every success story we hear, a reminder is appropriate that chemo drugs are not magic and their side effects and complications can be just as dangerous and debilitating as MDS. Quality of life has to be a primary consideration and it's up to families, not just doctors, to make those decisions.

I'm glad your grandpa had 79 years without MDS and got to do the activities he wanted to do for so long, but I understand what a shame it is that he couldn't do them right up to the end of his life. My deepest sympathies on your loss. Thank you for sharing invaluable advice with the MDS survivors who still have to make treatment decisions, and for reminding everyone to keep their affairs in order, a loving act to do for our families.

[Neel]

My sympathies for the family, may God rest the departing soul in peace.

Regards,

Neel

[bebop]

I am so very sorry for your loss. My dad is in the very end stage at 81. he too has been fighting for a year now. hon don't regret trying! Dad only got supportive care and really didn't have good quality either. despite transfusions he continued to go downhill. much love and peace to you and your family.

[Greg H]

I'm so sorry to hear about your loss, and so grateful that you posted your thoughts about treatment here.

The treatments for this disease are tough, and that means they are definitely not right for everyone, all the time. Patients and their families need good information to make these decisions, and your post about this will help someone down the road.

Thanks for that; I bet your grandpa would be proud of that.

Greg