Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). ...
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help please
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my sister had her second round of surgery a month ago and after several rounds of blood tests her hormone levels have not changed and ultimitely the surgery was a complete failure. she was on octreotide (spelling?) which was not really helping which is why she had more surgery. she is told that the next step is radiation. does anyone have any insight into this?
also she lives in new zealand and is getting all her treatment through public health but i'm worried that being as how its such a small country that she might not be getting the best treatment available. does anyone know where the 'dream doctors' if there is such a thing are? our family will send her anywhere if it meant she would get better treatment and i'm just trying to find out where that might be. any insight would be so much appreciated. Posted on 01/24/08, 01:01 pm |
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What are they checking GH or IGF-1 because 1 month post surgery does not seem like enough time... I am having to decide soon what my next treatment step is going to be... I sought a second opinion because my doctor seemed to really want radiation.. mind you my MRI did not show any residual tumor..so my second opinion Doc said "You can't undo radiation but you can always do it...so what is your hurry..."hmmm I thought that was good advise given all the details of my symptoms and IGF1 levels etc... but again everyone is different... 
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Hi NYG Your sister is so lucky she has someone who really loves her and is trying to find the best option thats out there but if there was an easy answer our site would be empty.I agree with mctrjt it seems a little early.One dose of drug my work one may not.My drug is succesful as to blocking levels both GH and IGF but its took the largest dose.But then my tumour is not gone.but I am happy that my symptons are gone for me even if the new large dose is making me sick at the moment.We are all different but its always good to question to find the best for each of us.Keep searching as we all are never give up JJx
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thank you both for your replies
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Everyone is right about waiting on the radiation..there are two types and both seem extreme to me but I didn't have to face that decision, but a second opinion is a great suggestion"The Mayo Clinic" is worth checking into to... my neurosurgeon told me they are state of the art with developments in these types of tumors. Just google it and there is all sorts of info... Good Luck!
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