Fantastic guide in english for neuroendocrine patients

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lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Fantastic guide in english for neuroendocrine patients

Postby lottie13 » Thu Jun 07, 2012 11:15 am

A lot of this guide is specific to NET but there is also lots of other info
viewtopic.php?f=44&t=462&p=1178#p1178

pennycsf
Site Admin
Posts: 595
Joined: Sun Jan 24, 2010 7:19 pm

Re: Fantastic guide in english for neuroendocrine patients

Postby pennycsf » Fri Jun 08, 2012 9:44 am

Hi Lottie
This is great! :D I have asked permission from the copyright owners to make it available on the Forum in an easily downloadable form.

As soon as that comes through I'll put it here and in the NET links section.

Penny

pennycsf
Site Admin
Posts: 595
Joined: Sun Jan 24, 2010 7:19 pm

Re: Fantastic guide in english for neuroendocrine patients

Postby pennycsf » Thu Jun 14, 2012 12:15 pm

Permission received! I have put the downloadable booklet in the "Useful Docs" section and also in the NET section of the Links Forum.

Thanks so much for passing this booklet on, Lottie, :D it has also put me in touch with "patient relations department" at Novartis which could be useful.

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: Fantastic guide in english for neuroendocrine patients

Postby lottie13 » Thu Jun 14, 2012 1:53 pm

thats good news about novartis as when my husband received a long acting injection,3weeks, it was totally against novartis protocol.
they insist on 2-3 weeks short acting shots first, as if you have an allergic reaction and have started straight away on the long acting you are in real trouble.I did ring them to ask for advice on short acting injections that my husband really needs, rotterdam wrote to the prof to advised and he refused to act!
maybe I can now go to your contact and get the advice.
Roche in the uk were very helpful too, as the pharmacist here flagged up a problem with allopurinol which can reduce the efficiency of one of my husbands chemos, I spoke to Roche, then had email from them in french to give to our medecin traitant, as the prof was not interested in the reaction at all!
I posted the 'brochure' from the nurses on the 'apted group on facebook, apologised for it being in english and asked them to ensure this was the minimum standard for all NET patients.
My husband has just finished 2 weeks of combo chemo, he had a blood test today but does not have an oncolgist or any medical surveillance, in fact it is all very bizarre, to receive prescritpions by fax with no other information is in my opinion close to 3rd world behaviour


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