Progression concerns for MDS

[Paula W.]

Hi Everyone,

I'm caring for my mom with MDS. She is turning 80 this December. She has lost approx 50lbs this past year. She is now 115lbs. She has no appetite at all. She drinks 2 ensure shakes a day and hardly can eat anything else. She now has an extremely painful hematoma in her right calf and severe hip pain in her left leg. She can't walk at all. She just had a bone marrow done on Friday, we are waiting for the results (although I'm not optimistic about the results). She is weak, frail and tired. At this time she is on a Revlimid and Vidaza treatment monthly. So far it seems to have kept her previous blast at a low number, but her platelets and blood have not improved at all. Today her platelets were at 10,000 and hemoglobin at 8.8. She gets platelet transfusions 2x a week and blood once a week sometimes once every 2 weeks.

I'm just wondering from other peoples experience, are we nearing the end for her? Is this how it happens? I'm so sad and scared for her, yet I so understand how tired she is of this fight. I'm throwing her a surprise 80th this Saturday, I just hope she is able to come.

Any information on what I should and should not expect would be appreciated.

Thank you, Paula

[Neil Cuadra]

Paula,

I'm not an expert but I'll share my thoughts about your situation.

Ensure can provide patients with nutrition and help them maintain weight, but your mom is apparently not getting enough to avoid the weight loss. That puts a strain on everything she and her body try to do.

Her lack of appetite could be a result of her condition or treatment but (and I hate to say this) it could also be a sign that she's giving up on herself or her body is giving out the way that's often seen at end of life. You mentioned that she's tired of the fight so I have to mention these possibilities. I suggest asking the doctor about it (out of her earshot). You know her best, of course, and perhaps you have an opinion about it too. If you're sure it's a medical issue, then you and the doctor can consider ways to deal with it.

If she's fully capable of making medical decisions for herself, you might have a frank talk with her about quality of life. Some octogenarians may prefer a less aggressive approach than the Revlimid/Vidaza approach, even if that means only supportive treatment such as transfusions. If she's aware of the tradeoffs and wants the treatment she's been getting, that's great. You just want to make sure you're honoring her wishes about it. And perhaps you've already had "the talk".

I know this is a strain on you too, and there's no easy approach. I wish you, your mom, and the rest of your family the best.

[Paula W.]

Thank you Neil. She has been getting blood tests daily and transfused at a minimum of 2x a week and shes been doing this for almost 2 years. She's had MDS for over 9 years but it kicked in full swing 2-3 years ago. She's been on the Onconova trial (which was difficult) as well. I believe she is tired and her body is tired. I'm tired for her. She really gave it her all and is the strongest person I know. I will speak with her and her doctor (separately) and see what the next step is (and there may be no next step). Thank you for your input Neil and thank you for all you do.

Paula

[bebop]

Paula that is how my Dad did towards the end. if you would like to talk further feel free to pm me.