Hi Eli,
I have been reading about Nellie's progress and am glad that Vidaza has helped. My husband was 57 when diagnosed w/MDS in 10/2006. John's doctor (in Naples) is also Morris. He was evaluated in Houston (Dr.Beran at MD Anderson who recommended Dacogen) and also evaluated in Gainesville by Dr Cogle. The sentence in your prior post has me very concerned due to another alarming similarity...
"...exposed a lesion in her kidney. Now more tests will be done to explore how serious this may be"
Please do not go into this lightly- Do not allow any invasive procedures to be done without other warning signs present (eg: super high Creatinine, blood in the urine)!!
Do not allow any imaging tests to be done with contrast!!
When John was originally diagnosed he felt fine, just tired. He complained a little of bloating & distension of the belly. The ultrasound showed "something" and, though no other symptoms were present, they sent him to a urologist (Wise) who non-chalantly did a procedure to see what the "abnormality" of the kdney could be. Wise reported to us that "it must have been a shadow from the way his organs are pressed together" because he was unable to obtain a sample adequate for testing...John went home in severe discomfort due to a stent left in his urethra.
When the pain & bleeding became unbearable, John insisted upon being admitted into the hospital to have it removed (against the Dr's advice).
Eli, to be honest with you that was the beginning of John's decline.
The dacogen treatments he received through out 2007 didn't improve the MDS, but perhaps ceased the function of the injured kidney and impaired the good one. To make a long story short, today he is on hemodialysis 3 times a week. The MDS is complicating matters - with low platelets and low HGB. He is so weak and weary now.
I am so sorry for being so gloomy & for going on & on, but as they say 'forewarned is forearmed'. If we'd have known then what we know now, we would not have placed blind trust in the Drs.
Please post to this thread if you have any questions or comments.
I wish the best for Nellie & You!!!
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