Hi there Lizzie ..

Welcome to our little chat room ...

You don't say the name of the tablet you may take .... I know there are a couple of them ... I'm on tamoxifen .. 1 a day for the foreseeable ... I can only tell you my expierance with it and sure there's lots of others as everyone is different even when they have the same tablet / treatment ...

I just got really emotional in those first weeks, crying at everything ... but once I realised it was the tablet , I took a mild anti depressant which did the trick ... and I've had nothing else since .. though I've heard a few different things too ... hopefully you'll get more info from others along the way ... chrissie x

Hi

I'm going to be taking two tablets, Capecitabine and Temozolomide for 3 cycles over 3 months.  They've said they won't allow any longer than that and then want to operate again. I have a friend who had IV chemo and she did ok apart from feeling sick, but was given anit-sickness.  They have said it all comes down to the individual so I guess I will find out soon!

Thanks x

Hi

I know it was a real shock to me at the start as I had never heard of this type of cancer before.  Mine was grade 2 on the pancreas and stage 1/2 in liver and lymph nodes.  I had become more and more unwell and lost weight and unable to eat so they told me after the endoscopy they could see the tumour and said the best treatment for me was to cut out as much as possible.  I am not a big alcohol drinker, but had collapsed once and admitted to hospital twice after a few drinks on nights out as the alcohol cause immense pain, more so than the food I was eating.   It was a hard operation and was in intensive care for two days and then in hospital for a further 5 days.  Not pleasant at all as I was very sick, but the benefits of the surgery have been remarkable.  I can eat anything at all now and I have no pain.  I still can't drink any alcohol as I have some left in the liver, but that I really don't care about if I am slowly getting to where I need to be. 

After the chemo, they have said they will look to cut out the remaining tumours in the liver but will be another big operation due to the spread.

I am aware and have been told due to the type of cancer and the slow growing I could have more microscopic cells that could grow in the future, so it isn't something I will ever be rid of and will be scanned every 6 months for the rest of my life.  It seems that this cancer is rare, and there isn't a great deal of info out there, but there are many treatments they can try, but they've also said the chemo for me only has abouot a 30% chance of shrinking them, so they will need to do something else for me.

Injections are something they mentioned to me, but it does depend on if the tumours are functioning or non-functioning, the grade, the spread and all the test results on bloods, urines etc.  It doesn't sound as though any two cases are the same, so they have to work on the individual which makes it harder for us all to chat about it, as there are so many differences and to compare if probably not the best way.

I've done my own research and scared myself, so have stopped and just taken the advice of my oncologist and talked to nurses for support.  

I have found that my outlook and view of life and what I want to do is totally different which I know is hard for family and friends to understand as it makes you a verry different person.

As long as you're getting the support you need too, as I think my mum has suffered more than me in a way as she's been there since the start and was very emotional and struggles to understand how I have changed and feel now.  My partner is alot calmer and lets me behave (sometimes emotionally and irrationally) so I don't have to hide my feelings, as I did to start.

Sorry for going on, and I hope you get the news you want and they can help your partner

x

Hello.

I will keep it short for you but may help you and your partner.

Firstly, if your GP does not understand a NET then asked to be referred to a NET Dr. If you have one then they are the people normally in a good position to advise you as they specialise in NETS,

It has been very hard and i have had serious complications along the way but i am still here approaching 12 years with NETS in November. On the NET PATIENTS FOUNDATION Site look for NET NATTER GROUPS  a set of meetings across the Country where you can attend if you wish and speak with NET Nurses and other patients.

There are two areas that may help you. Be careful and utilise sites like i have listed below, NOW! 

1. NET PATIENT FOUNDATION (01926 883487) who can easily be located on line in GOOGLE. They are a centre of excellence one of a few in the UK. They are a great team who know all about NETS and all that is associated with them. They can be of invaluable use to you and your husband.

2, A Patient called RONNY ALLAN again a simple search and include NETS. He has a site that is massive and a wealth of information and advice plus much more.

You may find more information in my history but i have had a lot of treatments over time some good and some not so good. 

On the sites that i have supplied you will get all the information on treatments and targeted injections. 

These are fairly new L90 & L177 drugs.

Ideally, this will help you a lot.

Finally, two areas get a NET Doctor if you do not have one and secondly NEVER GIVE UP!.

I could go on for a lot longer but there is no purpose as the places should help you understand a NET etc.It will save you lots of time researching.

All the very best.

Take Care.

Please let me know if i can assist anymore?

andydorro1.