Hi to you all

Hi Steven

Good to hear your news about the Y-90 treatment. If it works for your wife, it is probably the best option available if the mets are non-operable.

As for the wine drinking, I have liver mets too and I have read pretty extensively on the question of whether it can do harm or not. As far as I can find, providing the intake is moderate - a couple of glasses a day, then it will do no harm. In fact, if she drinks red wine, then it may be beneficial because of the anti-cancer effect of resveratrol. It is also good for the heart and (in my opinion) the morale!

If you are still worried, I would suggest your wife takes the natural liver detox called milk thistle (as I do) - it is available in health shops and supermarkets. The active ingredient is silymarin which is the collective name for a group of bioflavonoids which protect liver cells by reducing the take up of of toxins and stimulating the liver to eliminate them from the body. Silymarin is also a powerful antixidant and can help in the regeneration of damaged liver cells.

The other important thing to do is to drink plenty of water (2 litres a day) - again this dilutes toxins (not just alcohol) and speeds their removal from the body.

Hi Steven

My medics have repeatedly said "if you don't experience any bad effects, its not doing any harm". I've rarely had any problems with beer (in moderation); a couple of years ago small amounts of wine gave me bad hangovers so I stopped drinking it, a few months later a couple of glasses was no problem, when I was on interferon wine & beer gave me evil headaches within minutes so I stopped again, these days moderate amounts are no problem. So it seems to be one of those "listen to what your body is telling you" things.

Regards

David

Thank you Tim and David.
My wife has a glass of red wine on an evening (not every evening) but as she is feeling very well, she does drink more when socialising.

I have been to the health food shop and got her some milk thistle Tim as you suggested. She is going to drink more water on a daily basis as she has never drunk enough as far as Im concerned!

She does find wine relaxing but does not want to aggravate her liver. I am very grateful for your information and suggestions. You have put my mind at rest.

I hope you both are feeling well at present and that it remains that way for a very very very long time to come.

Regards,

Steven

Hi Steven

I have just read your story about your wife. I to have non function pnet.
I no longer have the tumor in the pancreas as i had a major operation removing it. But i do have multiple tumors on my liver which are inoperable. I am currently having chemo to hopefuly shrink and stabilise, which has made me very sick and weak but i am only 29 so i seem to be able to brush it off quickly. I may get a liver transplant in the near future but the chances are slim. I have been very well though and would never have known if i had not gone to the docs which was only really due to paranoia and a slight pain in my side. I have wrote my story which you can read which will tell you about my wrong diagnosis.
Being only 29 i to like a drink. I did stop and whilst having chemo i cant drink as the thought turns my stomach. I was told however by martyn caplin and the team at the royal free that i can have a drink but in moderation. When i stopped drinking i did notice how much of a social thing it was, i am sure that a few drinks here or there is fine and as tim said it can help reduce cancer cells.
As this cancer is non functioning there are very few side affects and before i started my chemo i would often think this was not real and it was not happening to me and to carry on as normal including socialising and having a drink which is maybe how your wife is. Sometimes my friends and family just cant believe it because they expect me to be very thin and jandiced but i am not. When i first started chemo i was so scared because i felt so well i was frightened from going from well to ill.
My future husband is very supportive like you and i thank my lucky stars i have him and 2 wonderful children. He would be quite happy to talk to you anytime and if your wife ever wants to talk i am here.

Sending lots of love
Laura xxx

Hi Steven,

My Roy likes a drink too. It is so hard isn't it when we worry so for them. It has been a while now since his diagnosis and I have started to relax a little with him. For a long time I had to really fight the urge to wrap him up in cotton wool, I think that is something that is difficult for us as carers, getting the balance.

I think a drink every now and then is fine. We often have a glass or two of an evening and Roy drinks more than I do generally. He tends to drink red wine (so I think of the antioxidents doing good).

He is undergoing the Yttrium 90 treatment at the moment under the Royal Marsden in Surrey. He has had his first treatment and is due his second on the 2nd or 3rd March.

If you ever want a chat, we are here

Love Sam.

Hello All, really hope you all as well as you can be.

Just had some good news and some not so good from my results from all the scans I had.

My liver is stable at the moment and I am awaiting details of any changes to the tumours, but pleased it seems really quite happy.

Apparently I have more lesions on my ribs, again I await further details but at least they are not life threatening, so quitepleased with that.

Will post when I get sizes and rib spread.

Take care
Sally

HI Sally,

Glad to hear you've had some good news as well as the not so good. You are inspirational to us all and it is always so good to read your posts. Please take very good care of yourself.

Best wishes,

Angela

Saw my consultant today for all my test results, CT,Bone,Octreotide,bloods,heart ect. The good news is that the liver is very stable and the feeling is now that Sando is helping this, but also the Sirilimous has also been known to halt or shrink the tumour growth, so maybe its a combination of both!!!
I have 3 lesions on my ribs, but they are unsure if they were not there last time, so I think that is fairly positive.
I have known for years that my 5HIAA was always high, but quite shocked to find out it is 1247!!! also my Chromo A is also huge at 438, but after having this disease for at least 20 year, who cares what those results say, I'm alive and kicking and as my consultant says, those results are normal for ME, so thats ok.
She mentioned a few new and not tested treatments and trials, but i'm not willing to do anything yet until I am more poorly.
Hope everyone is coping and not alone.
Sally x

That's great news Sally. I went to RF last week and my test results were the opposite of last time - this time my urine was up and my blood down, which like you they said was my normal pattern!! They also said the most important thing was how I felt, which is good! So don't think too much should be read into all the tests, otherwise we tend to get a bit paranoid that something is going wrong! Cx

There really isn't a 'normal' for us Carcinoid patients is there and as we know and have been told, it's more about how we feel. Glad you are feeling well, lets hope we continue to feel well and hopefully the tumors may even shrink a bit.

Take care

sally harrison
Hi Sally One of my friends is doing a sponsered walk for Wallace Cancer Care in Cambridge and he has recommended it for me to visit I think it is attatched to Addinbrooks Hospital. I think I will try to get there in a couple of weeks time
. Next Wednesday I am having a cataract operation I do not know how long they will stop me driving.

Has anyone heard anything about Novartis new drug SOM-230?

I am still having trouble with my reaction to food so I am willing to try anything so that I can eat a proper meal. I hope you are still feeing good Sally Best Regards Pat

Hi Everyone

Just an update on my wife Sarah. She finished her Y90 treatment in February and the scans show shrinkage of both the main tumour and the ones in the liver. She tolerated the treatment very well-loss of appetite was the major concern as she lost a fair bit of weight but she has since regained both her appetite and some weight. She feels very well, better than she has in two years.

We are now planning holidays and just getting on with our lives. The treatment was very worthwhile for her and I would like to say good luck to anyone who is to have it. I know everyone is different and it may not be for everyone but I just wanted to share our positive story. We are still praying for a cure as Im sure you all are.

Kind Regards to all

Steven

Thank you for that report Steven. So glad everything went well and I totally agree, just enjoy your life and face whatever comes next at the time. With Carcinoid our weight seems to flutuate a lot anyway, I often don't feel hungry or feel a bit sick and can only have small meals.

Your report has come at a good time for me as this is a procedure that I may need next.

Have a fantastic summer xx

Hi Steven

A very encouraging post I must say. Best wishes for Sarah's battle with carcinoid.

Virtually all the postings re Yt90 have been uplifting up until Julie's last experience.

Your news has come at a very poignant time, as poor Julie Lincoln had a recent 'nasty' worrying reaction to her last treatment - Julie, I wish you a speedy recovery from that dreadful episode and hope that you will be able to eventually resume Yt90 treatment.

Julie - You appear to have been very unlucky in reacting so adversely to Yt90 and I can't help wondering whether there is a cause to this reaction somewhere in your constitution which I hope the medics will rapidly diagnose, rather than the Yt90 per se. In other words, some other ?pathology (or ? drug) is first reacting (or altering the Yt90) to cause an unexpected reaction?
Please do let us know, how the noid experts finally analyse your reaction.

Sally - Do not let Julie's experience put you off your planned Yt90. If it was me (and it may be some day !) I would go for it. It has too much in its favour not to give it a try.

So chin up you noids as Summer is here and lets enjoy it. Oh! and where's the toilet by the way?

Blessings galore

Graham

Just thought I would try and instill some positivity into us all. My daughter and I 'walked' the 'Race for Life' today, 5km. It was very hot at 28 degrees but had a bit of shade on and off. I felt ok until about the last km when I felt a bit flushy and weary.

We were wearing pink wigs, star sunglasses and 'Cancer Research UK' t.shirts.

The most exciting thing was that we hit the £1000 mark last night for sponsorship. I know that money will help you, me and everyone suffering this awful disease.

Take care all
Sally