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Re: withdrawing from treatment

PostPosted: Fri May 23, 2014 9:01 am
by Pat
Hi Plum
this must have been really hard for you

There are other options of treatment, of course depending on the individual and their endocrinologist's advice; these are:
Pegvisomant is a novel growth hormone receptor antagonist.
Developed for use in acromegaly patients, who have had an inadequate response to surgery and/or radiation therapy and where an appropriate medical treatment with somatostatin analogues did not normalise IGF-I concentrations or was not tolerated.

Signifor which is currently in trials for acromegaly patients and could be available this year I think

Yoru endocrinologist would have heard of these and maybe worth discussing

Re: withdrawing from treatment

PostPosted: Fri May 23, 2014 3:02 pm
by plum
Hi Pat

I think that the problem is that I have different goals from those of the endocrinologist.
He's looking to protect my heart and prevent further tumour growth etc ie all sorts of fairly nebulous stuff in the future.
While I'm experiencing the day to day limitations and poor quality of life - lost livelihood, lost profession, lost plenty in fact.
So I don't actually WANT a future if it's made up of this type of existence!.

I am sure it is not easy for him either since probably my appointments would be more productive if we shared the same goals!

I'm due to see him again in 3 months so I'll see what he says about pegvisomant etc.
Do they actually work in a noticeable way - ie improving quality of life?

have a nice weekend


Re: withdrawing from treatment

PostPosted: Fri May 23, 2014 5:47 pm
by Pat
As for newer/different treatments - I think they'd be looked at if current treatment isn't working
The aim of optimum (any) treatment should be to offer reduction in symptoms and improved quality of life

Has anyone else any experience with pegvisamont?

Re: withdrawing from treatment

PostPosted: Tue Jun 03, 2014 3:25 pm
by member_38167

I have just read this. How are you feeling about it all now?


Re: withdrawing from treatment

PostPosted: Thu Jun 05, 2014 2:39 pm
by plum
hi Fiona

Thanks for your concern.
I am trying to keep busy (as far as my low energy levels allow) so as not to think too much.

I feel like a test tube - brought out to be tested every six months and then put back on the shelf.
My symptoms are still developing - I am still degenerating and nothing is done to stop it.

we really need to trust the health care professionals that we depend on so the fact that i'm finding it hard to communicate with the endocrinologist is very painful.

I've been turned into a negative moany moany hypochondriac and this is not someone i recognise.


Re: withdrawing from treatment

PostPosted: Thu Jun 05, 2014 7:42 pm
by member_38167
Plum, I think you're are being very hard on yourself. It is not hypochondrical (spelling?!) to be concerned about a real medical condition that you know you suffer from - after all, you're not making this up! Moany? We all do the adult equivalent of shouting and stamping our feet when life is tough - well I know I do! It's pretty hard to pretend to be Polyanna all the time.

Everyone is different of course, but these are things that help me in case anything helps you too:

- inspirational quotes (feels a bit naff, but actually i find some of these really helpful eg. 'life is like a disco. They may not play the music you like, but while you're there you may as well dance.")
- changing my frame of reference ie. when I'm feeling like 'it's not fair that none of my friends have to deal with x,y and z' I try and consciously think about the 98% of the world's population who are living much less affluent lives than me, with unimaginable difficulties really.
- exercise. When I run down the hill near my house (less so when I'm running up it!) I feel like I could battle a dragon if I had to.
- socialising with friends. Can't beat a good gossip.
- Focussing on the moment. So much of the unpleasant stuff is in our imagination I feel. I really like my 'Mindfulness for Dummies' CD.
- Comedy.
- Anything intellectually stimulating, especially anything with a goal attached to it eg. a MOOC.

Re. speaking plainly to your doctor, could you try role-playing with someone to say what you want to say? Just sit back to back with someone so you can't see their face and practice saying what you really want to say. Part of the problem is finding the right words and phrases to say things that are difficult and uncomfortable, but if you've said them out loud many times before you're more likely to be able to say them on the day.

Remember, you're not alone in all this.


Re: withdrawing from treatment

PostPosted: Wed Jun 11, 2014 9:30 am
by plum
thanks for your kind words etc.

what an excellent idea about role play.
will definitely do that before next visit.

the clinic letter from the last visit has come through and i note that he is now recommending that my GP refers me to a dietitian to put me on a special diet (low FODMAP) because of the intestinal changes (Ugh - as if we don't already have enough to put up with so we have grown some extra colon also - how disgusting is that?). i looked this diet up on line and...... the foods to avoid include all the veggies that i am currently growing on the allotment. .... got to laugh. although i cried when i first saw the list of forbidden foods.
ha ha ..... the endocriniologist is punishing me for trying to withdraw from treatment.......

Re: withdrawing from treatment

PostPosted: Fri Jun 13, 2014 7:11 pm
by member_38167
Ooh blimey. Not come across that before. Well, at least this one it will be relatively straightforward for you to assess the pros/cons of the treatment they're recommending and decide what suits you best.There might be particular foods that are worse than others for example - hope it's something you don't like!