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Dad's MDS turned into AML

This topic has 3 replies, 1 voice, and was last updated 15 years, 1 month ago by jaxem.

Viewing 4 posts - 1 through 4 (of 4 total)

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April 7, 2009 at 7:13 pm #21958

kimdebernardi67
Member

Hi, guys. It is so comforting to know that you are out there going through the same thing. We just found out that my dad has AML. He was diagnosed 1/2005 with MDS with less than 5% blasts. Now he has acute myelomonocytic leukemia with 65% blasts. He has lost about 20 or so pounds and is feeling weaker. He is 65, has 7 chromosomal abnormality, and has mild COPD. Apparently these things make him not a great candidate for treatment; according to his doc anyway. We are waiting to see if Stanford will see him and see what treatments they could offer. Is anyone else in a similar situation? I’m looking for any advice we can get. We don’t want to just give up. I want my dad to have the best medical treatment out there. Any suggestions? I appreciate any help we can get. Thanks so much.

April 10, 2009 at 1:58 am #21967

jaxem
Member

kim
sorry about your dad’s diagnosis. go to stanford & get a 2nd opinion at UCSF who are also known for work in blood disorders. no reason why they won’t see him. monosomy 7 is a tough cell abnormality but they can deal with it. any idea how he contracted leukemia? I would think they would want to start him on an induction then consolidation chemo regimen like MEK.

April 10, 2009 at 10:54 pm #21969

kimdebernardi67
Member

Thanks, Jack, for responding to my post! We have an appointment at Stanford this coming Wednesday and are having his records sent to UCSF so we can get an appointment there also. I told him we should go everywhere until we hear something we like. We don’t know how he contracted leukemia. We were told 30% of MDS patients turn into AML. He also smoked a lot for many years. I’ve read that smoking can be a cause or risk factor. I’m very sorry to read about your wife. Was your wife treated at Stanford or UCSF? How are you doing?

April 12, 2009 at 1:54 am #21971

jaxem
Member

kim
a lot of mds can be treated as a chronic disease and a lot of patients do well with periodic treatments. when there are blasts involved in mds (RAEB), this can become a smoldering leukemia. The only remedy is to replace the blood (stem cells). Smoking?? I wonder. When cancer is involved, all bets are off! My wife was treated at Temple Univ. in Philadelphia, and at the Univ. of Minnesota. I know that stanford and UCSF are good institutions for treating blood diseases and they do stem cell transplants. If you’re willing to travel, the Univ. MN is far and away the premier institution in the country, if not the world for treating blood diseases. They are doing trials no one else is doing. They have performed many more transplants than anyone. Unfortunately, my wife was way too sick to undergo anything. It has been tough for me without her & as special dates pass like Easter, it hurts. I am planning to do volunteer work for Temple to aid patients & caregivers and I’m excited about that.
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