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window of opportunity

PostPosted: Thu Sep 18, 2014 7:34 pm
by plum
i've just learned something new, or which i had not quite understood before.
apparently there is a period of time after treatment starts, during which, improvements / reversals may (or may not) occur. But after a certain time, if things have not improved, then they will not improve.
has anyone else come across this ?

I have just had an endocrine appointment. At least the endocrinologist was honest with me. In fact he has never lied but i noticed a few things eg after a year he stopped feeling my hands for any improvement in puffiness.
Today he finally said that it is unlikely that the tumour will shrink since it has not shrunk yet. It is unlikely that anything will get better. In fact, he said that as I age, the damage done to my body will become more evident. I had mentioned to him that my hips are getting worse and I've started to get tingling in my fingers and that I was surprised given that i've been undergoing treatment.

i had surgery nearly 4 years ago. injections started a couple of months after surgery and i had radiotherapy (cyberknife) about 3 years ago. so i've had the full works.

he said that from now on the purpose of my appointments with him will be to make sure i'm not getting worse in particular to watch out for tumour growth, pituitary failure, heart disease, diabetes and colon cancer. he also mentioned a hip replacement but said i'm too young for that.

so is this it? is this as good as it gets? stagnant or downhill from here on?
would be interested to hear if this scenario matches what others have heard from their endocrinologist.


Re: window of opportunity

PostPosted: Fri Oct 03, 2014 5:37 pm
by member_31784
I dont have agromegaly but I empathise with your situation.
My surgeon was very honest with me and told me I might not feel as well as I'd hoped after surgery and my endo is very realistic but certainly attempts to make my life as good as possible, somtimes thats good some days not.
Good luck.

Re: window of opportunity

PostPosted: Sat Oct 04, 2014 9:37 am
by plum

thanks for your reply.

the first year or so post diagnosis was fairly traumatic so possibly that is why they did not point out to me that the best i could expect was 'nothing'. ie so long as i am not blind i can say that the radiotherapy has worked. ha ha.
well i am not so sure that i like learning this now.

you're right, some days are better than others, so i try and focus on those and ignore the others. (i still cannot say that they are 'good', just like i cannot use the word 'hope' in relation to my health!)

have a nice weekend.

Re: window of opportunity

PostPosted: Sat Oct 04, 2014 1:07 pm
by member_31784
Actually Plum I still have hope. Since my diagnosis ten years ago now developments in treatment have occurred eg , more exact doses of hydrocortisone, growth hormone treatment and intoduction of T3 as well as thyroxine. I dont hope for a cure but I do hope for medical advances and improved quality of life. Have a good weekend, hopefully ;)