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Old Fri Jul 15, 2011, 03:14 PM
Sandra T Sandra T is offline
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Join Date: Jul 2011
Location: Greater Vancouver, BC, Canada
Posts: 1
My Mom has MDS RAEB-2

I've known my mom has MDS since before Christmas, when we took her in to the doctor because of her short term member loss, which we thought was the early stages of alzheimers. They did a blood test and her platelet count was in the 20s. She was referred immediately to a hematologist and he tried her on prednisone but it didn't have the desired effect. She was then referred to an oncologist early this year, who started with red blood cell and platelet transfusions. She is now 85 and before this had no real health issues.

Her blood was tested weekly and at first her transfusions were about every 3 weeks. This increased in frequency to about every two weeks. They would transfuse if her hemaglobal dropped to 85 or below and if her platelets dropped down to 12. After transfusions they would rise up to 105 and 30, respectively.

Two weeks ago, she became really weak and couldn't get out of bed, get to the bathroom but she could feed herself. However, her appetite has been really waning over the last few months. My dad couldn't help her at home as he has his own health problems, so she was taken to hospital.

While in hospital, she has daily blood tests and much more frequent transfusions. She is also receiving oxygen. They still bring up her counts to the same levels, but are only lasting days rather than weeks. Her most recent transfusion was on Monday. She also had an infection, which they treated with antibiotics and finally pronounced her clear of it two days ago, on Wednesday. That day she said she felt the best she's felt in ages. They removed the IV and even said her blood counts were stabilized (105 hemaglobin and 30 platelets). The nurses had her up out of the hospital bed and taking a few steps. Then yesterday, Thursday, she took another turn for the worse, her counts are down again at 103 and 16, respectively.

These last two weeks have been a real roller coaster ride, with a lot of ups and downs. The palliative care doctor has told us that as long as the transfusions keep bringing up her blood counts, they are still helping, albeit temporarily, and can be continued until they stop bringing the counts up. But he also said once they are being done as frequently as every 4 days, its basically like pouring water into a pail with no bottom, and that it is akin to inhumane treatment. I think they would like our family to make a decision to stop the transfusions and transfer her to a hospice. The oncologist has basically said nothing else can be done. We are reluctant to stop transfusions, because she has really good days after the transfusions, is not experiencing any pain, is clear and in really good spirits, and her short term memory even improves due to better oxygen circulation. On the bad days she is really tired, her speech isn't as clear and her memory is poor.

Until I found this forum earlier this week, I didn't really have any idea what questions to be asking. I wish I had known about it sooner because maybe we wouldn't be in this situation yet.

I just found out from the hospital today that the type of MDS she is RAEB-2, which from further research seems to be one of the most serious.

I realize she is teminal and there is no clear answer for how long she might live with transfusions or without. I've read quite a few of the posts on this forum trying to find answers on what to expect and what, if any treatments might help improve her remaining quality of life, boost her energy and boost her immune system, but I don't want to raise false hopes if there really aren't any.

I also don't want to give up hope if there is something I've missed that might help. Does anybody have any suggestions, including on how to get her to eat? She really has very little appetite, which in turn is reducing her energy.

Thank you.
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