Thank you,Toni,
Although within the NHS at present, who knows what the PCT/commissioning boards will decide re funding. It is very hard to sort morbidity and mortality from the available data, especially for disseminated disorder.
Your comments are very helpful and will aide any restructure of financial situation if we are refused NHS care.
Again our thanks

I am now posting under bilaire13 as previously a memeber under marcus, but i couldnt sign in
my husband has just finished 4 rounds of lu 177 at erasmus in rotterdam
it is amazing place and all the staff are wonderful without exception.
My husband has seen no reduction yet, but is going for another scan and appointment on 16th feb with his consultant.

Hi Trish,

Good to hear from you, have been wondering how things were progressing. Sounds like things are a bit better for you now after the horrible times you have had.. Good luck with the scans, hope you have some good news.

Ann

Hi Grace,
Was wondering how you were and how far you had got with your funding issues? The situation is so frustrating I wish you well
Regards Toni

Thank you Toni,
The wheels go round! So will wait and see with fingers crossed!

huband just had his latest CGA result, was
74 jan 2011
149 october 2011
yesterday 220

I am really worried now and have no idea where the treatment can go now.
we have an appointment on 16th to have a scan and a review.
we are both scared and feel isolated,
here in france you get your gp, ours has NO knowledges of net, and we have a great specialist, other than that no support, we don't have anything like mc millan here in france, of flroence nightingale or anyone who we could talk to.
I once rang the cancer league for our area and said I was feeling desperate and needed to talk, answer, what about, started to explain how I felt but she kept saying yes but what do you want to talk about, I gave up!
thank god for this forum and also the carcinoid.org without them my husband would most likely be stuck in a cottage hospital waiting for the inevitable while the docs scratched their heads and said, c'est la vie!

PCT has agreed and relative goes for 1st course later this month. Fingers crossed.

Hi, we went to see my husbands doc in frb, no real change after 4 lu 177 treatments. he is still having bad carcinoid syndrome. had a ct scan which showed litttle change. sceduled for dopa pet scan in march but unfortunately, they used the wrong product! he went to paris for the correct scan f18 dopa pet and we were shocked by how much showed up, preiously unknown!
my husband according to hius specialist is running out of options and is just about to start oral chemo at home,Capecitabine and Temozolomide for 4 months, if it doesnt work they may try sandostatin shots again, We both feel he is at the last chance saloon, but no one has the balls to give a prognosis. I particularly feel alone but find the carcinoid coffee cafe on facebook a great help.
good luck to you all

bilaire13,
Sorry to hear you so despondent. Importantly how does your husband feel?
The Pet scan does show up so much more than other investigations - for my relative they found bone and retroperitoneal deposits not presviously show on anyother scanning techniques. (He has no symptoms from these deposits but they do probably account for the occasional carcinoid crisis he has had when he has had breakthrough from other regimens he is still on). I assume your specialist is also following blood markers with treatment in conjuntion with radiology?
I think one of the difficulties is 'they don't know' as even within carcinoid syndrome there is so much variation of tumour load and activity. This is one of the reasons why there are so few data re survival etc. My relative was given the standard 10 year rate over 16 years ago and has probably had CS for >25 years!
I had not realised that there was a carcinoid cafe on facebook - thank you.
Please do not be disheartened.