My Mom has MDS. She was diagnosed over a year ago. My heart breaks for her. The chemo has not worked so now she is just living day by day, getting blood transfusions and platletes weekly. She barely has much strength and she is skin and bones. It is really hard to she her decline like this. Just nice to know there are others around that feel like I do.

heart next month will be a year since Dad's diagnosis. He started getting blood in Jan 2010 and plts in October. he now gets 2 plts 2 times per week and 2 blood once a week. It is so hard watching him decline like he is now. I think he has been waiting on the arrival of his new great granddaughter. She was born Friday. It is so hard to know he probably won't be with me much longer. Keep us posted on your mom. love and prayers are with you and everyone on this board.

Dear Posh:
Thank you for the kind words. I know everyone is different and it is a hard guess, but does anyone have an approximate on the life span once chemo no longer works? I feel my Mom is declining.

no idea hon. I think we all have those types of questions. I wish I knew the answer. what does her dr say? do you go with her to the dr appts?

I live an hour away (and work full time) so I go visit on Sunday's, clean the house and fix a nice meal for her and my Dad. I did have a meeting with the doctor back in October. His only answer was "love her while you have her". He also warned that the platelets would stop working eventually. I'm wondering if that is what is starting to happen since she had 2 bags, 3 times last week plus red blood. By Saturday she had absolutely no enery. Yesterday she laid on the couch most of the time I was there. She started crying when I served lunch and said she didn't know if she could eat. I rubbed her back, and hugged her and she did finally eat 1 piece of chicken.

Thanks for replying. You are most kind.

dad has been plt dependent since October. he is now getting them 2 times a week 2 units each time. his dr says they are not working anymore. he does eat some but I can't say it's alot. looks like we are on the same path right now. very sad. I go with dad to all his dr appts. dr said at the beginning of feb maybe a couple of months. of course back when he got his diagnosis she gave him 6 months and he is still here

Hi Poshshorty:

I'm so sorry for you and your Dad too. It is heart breaking to watch this. I feel so helpless and have prayed that she pull out of this but I've come to the acceptance that it is just not in the plan.

I appreciate the responses I'm getting. It is so nice to be in touch with others that understand.

news for dad yesterday is scarey. normally his hemoglobin has been holding up and he got blood thursday like normal but by monday the count was down to 6 so tomorrow he is getting 2 blood and 2 plts and then plts again friday. he stayed in bed from the time he got home from meeting his new great granddaughter until monday morning basically. went to see him just a little bit ago and he was still in bed.

Dear Posh:
Very sorry to hear your news. My Mom is in the same boat. She was at the doc yesterday and received 2 units of blood and 2 units of platelets. She said her hemogloben was down to 6. She said it had not been that low in a long time.

I know you are hurting and I truly understand how hard this is to watch. We feel helpless don't we?

Take care Posh. Hugs to you.

oh gosh we are on the same path! how long has she been getting plts? what are her counts? hon we are in this together. if you need me I am here for you. btw my name is Elaine

Hi Elaine, my name is Diane. My Mom has had this for over a year. She received 2 units of blood and 2 units of platelets on Monday. By last night she was real bad again for a few hours then about 9:30 pm she felt better. She is on a roller coaster as far as how she feels. She is always extremely tired. She just called me this morning from the hospital and she is getting 2 more units of platelets. The doctor told her today that all they can do is continue with the transfusions and keep her comfortable.

Dianne dad was diagnosed in april last year but we now know he has had it for much longer. he too is getting blood and plts today and plts friday. when friday is done he will have had 6 units of plts this week. it is scaring me now. I hate this stuff!

are you involved with hospice care? This roller coaster doesn't leave anytime to regroup and rejuvenate. David's numbers are higher but he seems so frail. Think we are moving into leukemia but don't know what that means.

no hospice yet. we see the dr again monday. I think the dr wants to stop transfusions. 6 units of plts this week. not looking good right now.

new thing has started happening and honestly it has me scared. Dad is starting to be mean with me. demanding and mean. is this normal for end of life?