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