Hi to you all

Hi everyone
Just wanted to introduce myself as I have recently found this site.
My wife was diagnosed with a pancreatic net earlier this year. she also has mets in her liver.It was a big shock to hear the c word, we are both in our early forties with no family history of the disease. She is well at the moment but will be recieving chemo in the near future. The consultant says there is a good chance of shrinking the tumor but has not mentioned the liver.Does anyone else have this type of net(its non functioning apparently) and if so what treatment have you had for the liver.
Any info would be greatly appreciated.
Kind Regards
Steven

Hi Steven

Yes - there are several people who use this site who have non-functioning PNETs - I'm one of them.

I had my primary tumour resected in 2005 and a solitary liver metastasis resected in 2006. Recently, six more small liver mets have been found but these are too small and dispersed to be resected.

Where is your wife being treated? It is crucial to be with a multi-disciplinary team who have wide experience of this type of cancer - it is not at all common.

Best wishes
Tim

Hi Tim
Thankyou for your reply-good to talk to someone who can relate to this type of cancer.
My wife is being treated at the Royal Hallamshire in Sheffield who have a neuroendocrine team. Our consultant has stated that we may have to go to London for treatment in the future.He has not mentioned anything about resection( I dont know what that is)We have always been told it is inoperable and terminal. Any info/experience you can share would be appreciated.
Kind regards
Steven

Hi Steven

I've only just got back home and read your last post.

Well that's quite a declaration from your present oncologist and you have my profound sympathy with the impact that will have had on you and your wife.

From a position of total ignorance of your wife's disease, I would still say that there is always hope. No-one has the right to take that away from you. I have no idea whether your consultant is as up to speed as he needs to be on the latest therapies for this type of cancer but as far as I know Sheffield is a long way from the centre of the PNET universe.

To deal with the specifics - your consultant is saying that you may have to go to London for further treatment. That's slightly ahead of where I am in this journey - I'm telling my consultant that I want to be referred to London though I'm still waiting for the action to put that into effect.

You need to insist that they refer you without any further delay to a doctor by the name of Martin Caplin at the Royal Free Hospital in Hampstead - he is the leading guy in the Uk on this type of cancer. Don't be pissed about over this - get them to promise to do that next week. You have the right to do this under the "patient's choice" arrangements in the NHS.

More specifics - resection is just medico -babble for cutting something out surgically. If they haven't talked to you about this it may be because their judgement is that the cancer has metastatised (spread) widely to the liver and possibly elsewhere and it cannot be dealt with surgically. If you want to understand this in detail, you need to ask them to explain precisely what they have found in the various scans your wife will have undergone. This may be difficult to take in - so take a notebook and pencil and make notes of what they say - question everything and anything you don't understand.

Most of us on this site know that this may be a "terminal" condition but that may be months or years away from happening. It does not mean that all is lost. You need to find out what their view is of the aggressiveness of the cancer - to get technical, they assess this partly by how widespread are the metastases, what the cells look like under the microscope (their morphology - are they "well differentiated" or "poorly differentiated") and also by the Ki-67 index - a measure of the rate of cancer cell division (replication).

There are things that can be done even though all these indicators might point to a worse case scenario.

We are all in this particular soup together - do not be worried about asking lots of further questions and seeking help and support. There are long term survivors of this type of cancer who take part in these message boards so don't feel you are on your own.

I and others who read these posts will chip in with whatever we can do to help.

Best wishes
Tim

Hi Steven,

What Tim says is spot on. Get referred to Dr Caplyn. You can do this by either asking your consultant or seeing your GP and asking him. I would suggest you try and get all the copies of any scans and tests forwarded on, or see whether your hospital can provide you with a disk to take in so they have all the information.

My husband has a Pancreatic Net, he had chemo last year and it did shrink it quite a bit, getting on for 30% or so.

We have been told that Roy's is inoperable, but we have hope that this can be kept at bay for as long as possible. I do as much researching myself as possible so that I feel informed when faced with the consultant. If there is something I am not sure about, I come on here just as you have done and ask. It is a lifeline and we are here to help.

Best wishes to you both

Sam

Hi Steven I was told I had inoperatable and incurrable cancer about 2 years ago I asked for second opinion and got transferred to Dr Caplin at the Royal Free in Hampstead. I did have a very big operation performed by Proffessor Winslet after the carsinoids tried to strangle my gut.. The pain was horrible . They did a bypass operation . Whilst they could not remove the mass as it has got too close to my kidneys I still have them in my liver small amounts in my lung and chest
One year after op down the line I am leading quite a nice life still doing most of the things I did before.. As long as I do as I am told which is to just eat very small amounts of food at a time and take lactalose each day I have monthly injections 30mg , which helps Best Regards Pat..

Hi Tim, Sam and Patricia
Thank you ever so much for your kind and informative replies. My wife is seeing her GP this week and is going to see about a referral to Dr Caplin.
We obviously want the best treatment we can get so will pursue this.

I will keep checking in and hope that you wont mind me asking further questions.

Thankyou again and Best Wishes
Steven

Hi Steven

That is a very positive step - you will get the best treatment from Dr Caplin.

Perhaps I'll see you down there - I've just got a referral myself!

Please do ask any further questions - people seem only too willing to help on this site.

Best wishes

Tim

Dear Steven,

I can only 2nd what everyone else has said; Dr. Caplin is the top bloke for NETs in the UK, and, ! of the top Drs for them in the world. Furthermore he has assembled a terrific team of Specialists in a wide variety of medical/surgical specialisms who all understand how Nets may complicate whatever ops/treatments they may feel are necessary. Prof. Winslet for example, who also operated on me in tandem with Prof. Maclean is 1 of the best surgeons in Europe. You and your Wife will get the best of advice and care.

Very best wishes,

Angela

angela kobryn
Hi Angela You had the same team as I had I have seen Prof Winslett team since but noy Prof Maclean I am sure they saved my life. As I have said I am much better now but still have a nasty time trying to find a diet that does not give me a lot af pain .. The best news is that I can get away with eating chocolate I say thank goodness for mr Cadburry Regards Pat

Hi Pat,

That made me grin:-) Hurrah for chocolate! I don't know what I'd do without it. I agree with you about the lifesaving; they are great, and I certainly wouldn't be here today without them. I'm having another PET/CT at UCH next Tuesday, prior to seeing Martyn again in Oct. then I'm due the Y90. How're you getting on?

Best wishes,

Angela

angela kobryn
Hi Angela I am going to the Royal Free 23rd Oct for scans blood tests 24 hr test etc Then28th Nov to see Dr Caplin's Team Then 20th Jan to see Prof Winslett Team..I do not reallyknow what the Y90 is..
Actually I have had a bad couple of days I went to a charity event with Lunch included yesterday I think it must have been reheated or something because I had a bad reaction right through till now
I wiil not be going there again. I am due my injection next Tuesday, I am usually a bit better after that. I hope I feel well enough to go out on Saturday to have a game of bridge . That gives me something else to think about... Do you have really bad times? I am a widow living alone so I really do not talk about it to anyone I keep trying to chat and joke a say all is well . Best Regards Pat

Hi Pat,

Sorry I haven't replied earlier, my best friend died unexpectedly and then I had to go to London for the PET/CT. Unfortunately the machine broke down and I had to stay another night to get it done, so I've been offline.

The Y90 treatment is an IV infusion of a therapeutic dose of a radioactive isotope of the element Yttrium. It's given to "smuggle" radiation onto and into the tumours to kill them or slow them down. It's still relatively new and Dr. Caplin's team at RFH are 1 of the few teams to offer it in GB. Some posts on other topics on here have been about it and they are really informative.

I'm sorry to hear about your bad reaction; it can be really exhausting when something like that happens. I do have bad times and I know just what you mean about trying to "pass it off" or be lighthearted about it. Do you feel that you don't want to bore people or be a "moaning Minnie"? I do. It's hard, isn't it?

That's 1 reason I like this site and the American one, we're all in the same or roughly similar boat and can help support each other. Please keep posting on here and we can chat. You're not alone with it and you don't have to put a brave face on it. And keep up the chocolate therapy:-)

Love,

Angela

Hello to you all, just felt that I would send you a 'catch up' message about me.
My consultant has reported that my larger tumour has slightly shrunk, this information I got from her when I contacted her about feeling so ill recently, however I will be seeing her at the begining of October, so I ask if she can tell what's happening about the many smaller ones.
The reason I write this is because of the drug I am taking that may be causing the tumours to shrink. It's called'Sirolimus' and I was given it by the consultant that looked into giving me a transplant, this drug was known to shrink tumours, was then banned for reasons that I don't know but it now being used again, but not by many people. My liver consultant believed it could do this and now I am wondering if it is working!!!!!

The reason I have been so unwell is when I get down to just taking 10mg of prednisolone (steroids), my liver becomes inflamed, I feel awful and have to up the steroids again, but at least I feel better after they have kicked in. I then start reducing them again until it all starts again.

My liver function tests are all good (well for me) and all other blood results good,except iron levels and iron stores which I can never get up.

Hope you are all coping at this time, think of you all often.

Sally

Hi Sally,

That is wonderful news that that drug is helping you. I for one will be writing the name of the drug down. We are back to needing treatment for Roy as his tumour is growing again at the moment. We are hopefully heading up to the Royal Free next Friday for a consultation.

Love to all of you

Sam.