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MDS Myelodysplastic syndromes

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Old Fri Jul 15, 2011, 03:14 PM
Sandra T Sandra T is offline
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Location: Greater Vancouver, BC, Canada
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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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Old Fri Jul 15, 2011, 06:20 PM
Ruth Cuadra Ruth Cuadra is offline
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Dear Sandra,

I'm sorry to hear about the progress of your mother's MDS, but I'm glad that you've found Marrowforums. You are certainly in a very difficult position given that your mother is so transfusion dependent but is still responsive to transfusions. Those good days when she's feeling better and has more energy are certainly to be treasured now.

MDS RAEB-2 generally has a poor prognosis because the patient is essentially transforming to leukemia. Hospice care focuses on the patient's comfort and quality of life rather than on curing the disease. In this context, I think you could arrange that she continues to receive transfusions because they are restorative and alleviate discomfort/pain. Although it's not easy to stand by when an older person doesn't want to eat, it may be one way in which your mother's body is winding down. Hospice workers can help you understand your mother's nutritional needs at this point and plan a diet that suits her tastes and supports her energy level. I encourage you to visit the Hospice website and speak to the hospital's social worker about services that might be available for your mother's care.

There are many Marrowforums members who have been in your shoes. Every family is different and we can't presume to know what's right for yours, but I hope the collective experience you read about in the forums will help you now. Please don't hesitate to post your questions or just vent here.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Fri Jul 15, 2011, 06:52 PM
bebop bebop is offline
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I just went thru this with my Dad. His transfusions finally stopped working so they were stopped. His appetite was horrible and he lost alot of weight. At the time of end of life according to hospice information offer them food and water and if they don't take it try not to force it. It is the body's way of saying enough. Perfectly normal. Trust me though I know how hard that is to realize and deal with. If the transfusions are boosting her I would probably continue for a little longer. From the time they stopped until Dad's passing was 1 day short of a month. He was platelet and rbc dependent. Feel free to ask me anything. I am sorry you too are going thru this. btw Dad was 81
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Old Tue Jul 19, 2011, 10:31 AM
wilmasdaughter wilmasdaughter is offline
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Your mother's MDS

Sandra - I am so sorry to hear about your mother's MDS. I am going through a similar story with my 88 year old mother, however, hers is progressing at a much slower rate. As others have said, you have to do what is best for her and for your family. It is so hard to make these types of decisions, and I really am not looking forward to the time when we have to make these decisions for my mother. Just know that you have always, and will continue, to take the very best care of her that you are able.

Please take care and know that we are all thinking of you. Feel free to contact me off-line (via private mssg) if you'd like and I'll provide you with my email address so we can chat further.
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Jil, dtr of Wilma age 90; dx May 2011; MDS refractory cytopenia IPSS Int 1; platelets 35, WBC 3.5 & RBC 3.06
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Old Wed Aug 31, 2011, 03:58 PM
freedom99 freedom99 is offline
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Location: Leamington, Ontario, Canada
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Your Mom

Hi Sandra;
It's a difficult time with so many emotions, questions and decisions. One can easily be overwhelmed with the emotions when one dwells on all details of the situation, what is and what's to come.
Sharing on this forum is one way to talk about it and get some relief. Another way is to have a good friend who you can confide in and who will simply listen.
Refractory anemia with excess blasts I and II. RAEB was divided into *RAEB-I (5-9% blasts) and RAEB-II (10-19%) blasts, which has a poorer prognosis than RAEB-I. Auer rods may be seen in RAEB-II which may be difficult to distinguish from acute myeloid leukemia.(AML)
My wife has moved into RAEB-2 and Acute Myeloid Leukemia.
She is 63, has two platelet transfusions per week. That keeps it at around 15 but does not increase it over a three day period. This most likely means the platelets are not working anymore.
Red Blood cells are transfused two time per month. These are kept at 80 g/l. and do increase by about 20 each transfusion.
In the last month her white cell counts has gone up to 40 x10^9/l and blasts, bands, Auer rods and smudge cells showing up in the blood. This most likely means the onset of AML.
She was put on Hydrea one tablet of 500mg per day to reduce the white blood cells.
The thing is that the transfusions are still working and I will certainly keep that going as long as I can. The doctor did ask me to consider stopping the transfusions but at this point I'm not.
Keep the transfusions going as long as you can. Our level of transfusion for platetlets is 20 and RBC is 80.
I can see that every situation can be so different.
I see that you are getting some great support from the other people on this part of the forum.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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