New Diagnosis

[SusanJ]

Hello. My 73-year-old dad received a diagnosis of myelodysplasia yesterday. We have an appointment at the cancer center in our city on Monday. We know nothing about this disease. I am terrified. Nothing that I have read on the internet so far is very encouraging. Is this disease fatal? Any information will be so helpful! Thanks!

[JaniceR]

Hi Susan: I’m in the same boat as you. My 71-year old dad got diagnosed two weeks ago. I’ve been reading non-stop. He has RAEB w/monosomy 7 and 15% blasts. A high-risk case. We found a specialist with the help of this forum at New York Presbyterian and this Sunday we check him in to undergo a clinical trial of Arsenic and Ara-C. Everyone here is SO helpful. You fist have to find out what type of MDS he has, what percent blasts he has and what chromosome is affected. When you have that information, you can find tons of statistics on his prognosis… but alot of them are outdated and with new treatments coming out every day, I’m hopeful now. Everyone case is SO vastly different. What I found out is that my father started eating one whole pineapple a day and drinking a gallon of water a day… and his counts have improved. Also… no alcohol whatsoever. Go to the pathology dept. of the hospital that gave your dad the diagnosis and get his report and bone marrow slides for the specialist to review. In the meantime, read his report and blood counts and google everything!

[VIOLA]

Hi Susan, my Dad was diagnosed with MDS 5Q in July 2003. It was terrible message for us. I’ve never forgot it!We live in Poland. It was (it is) so difficult! As Janice wrote You must to know what type of MDS Dad has ans what chromosome is affected. The treatment is depended of kind of MDS. People on this forum are wonderful. I’m sure that You find out help and many necessary informations here .Best wishes to You and Your Dad!

[sarah]

I still find it so very strange that Drs tell us this is a rare disease, but so many new posts come to this forum almost weekly. I found this forum almost 4 years ago when my husband was dx’d. I am beginning to think it is not as rare as they say. I am sure there are even more that may never find this forum. Best advice I can give you is find a specialist in MDS. Research, write everything down, chart cbc’s. You will become completely absorbed in educating yourself on their classification. Go to appointments with them if you can. Best wishes.

[JaniceR]

Susan: I forgot to tell you, we bring a taperecorder to all our doctor appts. It is such a big help. It’s so hard to digest what the doctor is saying when you’re nervous and stressed. Better to go home play the tape over and over and then write down all the questions you have for him. And… look everything up.

[Suzanne]

You have gotten good advice. Most important at this stage is to go to a “center of Excellence” for MDS for a consultation-not just a cancer center in your city.(there is a list on this site and if you call the organization they can help with names of doctors.)You need someone with lots of experience with MDS and not just with supportive care for older patients that used to be the only alternative. Many of the treatments are still in the trial stage. What type of MDS he has can make a big difference in the prognosis and treatment. Some are easier to treat and live with then others but there is hope now for all types-even AML. Good luck.

[SusanJ]

My heartfelt thanks to all of you who have replied. I feel a little more hopeful now, but I still feel like someone has stuck a knife in my heart. It really helps a lot to know that I am not alone in this. I look forward to communicating with all of you! I will keep you posted as things progress. God Bless!

[lynne]

Susan………I am 64 years old and was diagnosed with MDS-RARS almost 5 years ago,and I’m doing fine so far. It is such “doom and gloom” at first…all the written information is so negative…..just keep on getting all the info you can as to what type,etc., and educate yourself,and this forum is wonderful!

[SusanJ]

Thank you so much for the encouragement. Right now it’s very tough. I didn’t mention in my first post that my dad has congestive heart failure and also has a pacemaker. That is the original reason that he went into the hospital, then when the blood tests were done, this was discovered. This hit us like a ton of bricks. He is home now but he still doesn’t feel good. He is so weak. He is on a heart medicine, fluid pills, ect. So that worries me, having this disease on top of the heart problem. I feel so lost, I can barely function. I feel like my life will never be the same.I need all the encouraging words I can get. Thanks!

[seekay]

Hi Susan,

Please go to FranM’s post and read what I wrote. It might be useful for you.

best,

CK (seekay)

[Author]

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