New mamber. First post. Hoping to find a little support here!

Hi there.
My name is Neil, I have recently been diagnosed as having a carcinoid tumour. 18 months of distressing diarrhea, soiling sensation, abdominal pain, dizziness and blacking out. After months of, 'just a tummy bug,' to 'possible IBS' to 'possible crohns' to 'dypepsia and colitis' The Gostroenterologis deciding to have me do a 24hr urine test. 5 HIAA level returned at 341.2, second test came back as 1318.9. However CT scans and Octreoscan, echo have all been unremarkable. Has left him scratching his head. 10 days in hospital started treatment with Octreotide, diarrhea abated, much of cramping gone, still dizzy & passing out. Refferal made to Prof Blooms Endocrine team at Hammersmith.
My major concern is that i am becoming increasingly anxious and down with the whole thing. Generally I have the ability to show strong emotional fortitude. Alas, carcinoid is draining me emotionally and physically.
If it wasn't for the Consulant at Pilgrim Hospital allowing me to contact him, and tweaking meds, and offering support I would have no place to turn to on a medical front, as my GP is scared to commit to anything to help. The practice has however agreed to take on the cost of Octreotide.
Are there any persons here in a similar predicament? It would be great to hear from you.
Neil

Hi Neil

I have been recently diagnosed as having a carcinoid tumor in an area called the mesentery, its close to the colon.
It is quite large so it showed up striaght away on a normal ultrasound scan. I then went on to have CT and Octreoscan which confirmed this. I am going to seee the surgeon on tuesday to discuss the op. I have to have a small section of my bowel removed also as they think this is where it originated.
I am lucky in as much as I dont have the syndrome, no flushing, no diarrhea.
I am just in quite a lot of discomfort and my tummy is really bloated. I know what you mean about feeling anxious, I just cant seem to shake off the fact that this is indeed some form of cancer.
I saw Professor Nigel Bax at Sheffield Hallamshire and has been very reassuring and positive about the whole thing.
He told me that he sees many patients, who have not been able to have their tumor removed, and who have had spread, and they have been going back to see him for over 20 years and their condition hasnt worsened in that time.
I try to draw comfort and encouragement from that and know that even though I am going to have my tumor removed, I will have to be checked regularly over the years just to keep an eye on things.
Please keep in touch and let me know how you go on. Maybe we could excahnge e mails?

Regards
Sue

Thankyou so much for a speedy resonse! Having read through many of the posts here, it serves to calm me somewhat. I am struggling with Syndrome although the injections are suppressing much of the symptoms. I find colpermin to be a god send for the bloating (as a bloke trapped gases etc tend to cause more embarrasment!) And being just peppermint oil, it's not as though i'm adding to a lengthy list of prescription meds. I am just quite down with it all, as i'm unsure as to what will happen with Hammersmith. I'm in Lincs, there are specialists in Leicester and at Queens Nottingham, however my Consultant seems to think that due to the odd nature of my case, that i will be of particular interest to Imperial College. Dreading it. I have been questioning wether the dizzy spells/faints are stress related, a locum GP assures me it is highly likely to be hormone surges from wherever the growth is. I wish to push for exploratory surgery to look at my appendix and liver. The raised 5hiaa levels tell a different story. I've grown indifferent to my treatment on the matter, as i'm made to feel like some sort of sideshow, for junior docs and med students to prod and poke! CT Scan, flexible sigmoid, octroscan, ultrasound, blood tests all ok. Apart from the raised urine and syndrome. Very frustrating. Rarely leave the house, as i struggle to stay upright!
Would you be willing to let me know how you get on with the surgeon,and the op?
Best of Luck,
Kindest Regards
Neil

Hi again Neil
Of course ill let you know how it goes on tuesday. Since I posted this I have had another call from the hospital with regard having a colonosopy before surgey. Apparently this is to give a better, inside view of my colon before they operate and know exactly which bits need taking out. Im told it will only be small section therefore I wont need a bag, which is a huge relief. I sometimes just cant believe this is happening to me, I have always been fit and well, still look it in fact.
The only other thing I have noticed is a vague tiredness, headaches and a little moody at times ( not counting PMT days lol)
I really hope they can get to the bottom of it and find where your carcinoid is. I hear that there is a different type of scan other than the octreotide, which is more thorough and shows up smaller tumors. Perhaps you could ask your doc about that?

All the best
Sue
e mail susiepilley@hotmail.com

Hi Sue
My consultant is Dr Newell Price at the Hallamshire who I believe works with Prof Blax. I have been seeing him since May 2008 after being diagnosed with a Non Functioning Pancreatic Net in April of that year. I was originally diagnosed with Pancreatic cancer until I had a biopsy which showed it to neuroendocrine. There are so many more options with this type of cancer, especially as it is slow growing. I am pleased that yours is operable and there is no spread. Mine is inoperable due to the position and I have mets in my liver. I am currently being treated at the Royal Liverpool, having Ytrium 90 radiotherapy as they do not do that at Sheffield. The team at Liverpool are fantastic, very upbeat and very much at the forefront of treatment options, although they do not get the publicity and praise that they deserve. I am back there on Thursday for a check up and to see if I have the go-ahead for my next treatment.

I hope things go well for you on Tuesday. I know it is a shock when you find out you are living with this but you are in good hands. Stay positive and strong and do post and let us know how you are.

Take Care
Love Jackie x

Hi Niel

Sorry you've had such fun over the past couple of years -if we had more common cancers it would be much easier to get diagnosed, but as the prospects for survival and quality of life are much better with carcinoid than most of the common cancers, I'd rather have carcinoid if I've got to have anything.

As far as I can understand, new surgical equipment developed over the last couple of decades has made surgery for mid-gut carcinoid much easier and successful, and the long-acting octreotide (sandostatin LAR, or lanreotide) has been shown to slow down or stop further tumor growth, so the prospects are OK. Its a pain being "medicalised" though - doctors, nurses and hospitals becoming part of your routine for the forseeable, but at least all the ones I've met and heard about in UK and europe (except one) are really nice people.

The gas is a nuisance too, but "better out than in", and I've found it somehow more controllable in public situations. Still have to take a walk around the garden sometimes when visiting relatives, though - and if you're outdoors there's always the worry of lurking climate change activists taking note of your contributions to the global CO2 balance.

There's a swedish study indicating that peole with mid-gut carcinoid have a 77% chance of surviving the carcinoid for at least 15 years - and that was based on data from the 1960s-1990s if I remember correctly, before widespread use of sandostatin/lanreotide; so I reckon there's a good chance of carrying on farting for a long time to come!

Good luck at hammersmith!

David

Hello Neil
I'd like to start by saying I have had Carcinoid for around 20 years, been to hell and back, have so little liver left its a bit like a string vest, my 5HIAA is off the scale at over 1400, but I am really well at the moment, best I've been for years, so please dont feel that we all drop dead after a year.

The passing out etc could well be something to do with the combination of the carcinoid crisis and panic attacks set off by fear of feeling unwell and not knowing what to expect. I had many years of terrible crisis, but when I look back on it, I wonder how much I bought on myself.

Finally, I have been under the fantastic Dr Meeran at the Hammersmith (now a professor) all this time, they pulled me through, got me tweaked on my medication and have been so supportive.

Take care
Sally

Hi Sally,
I guess you may have hit the nail on the head with 'Carcinoid Crisis' as i do feel myself getting worked up about it all. My case seems to be rather unusual, owing to the lack of quality imaging, although I have been told without doubt that there is a carcinoid tumour, because of the Syndrome symptoms and 5HIAA being hi like yours. Sfter a recent pass out episode that caused a blue light to Pilgrim Hospital, the specialists in CDU arranged a reapeat of 5HIAA, and this time had reduced to mid 600s. Still some way to the symptoms being fully suppressed with Octreotide. As for Hammersmith, my Consultant at Pilgrim discussed the options openly, and said that Hammersmith may be the only realistic place for help. It is Professor Meeran I am to see I believe.

Thankyou for you post reply

Regards
Neil

Thankyou David for the Kind words of support!
We may have solved the renewable energy problem! If Methane can be harnessed for fuel, why not our 'escapes'?!
I did have a chortle to myself though!
As for being mediacalised, i've kind of gotten used to it now. i had a torrid time with the octreotide titration in hospital, and after 10 sleepless night decided enough was enough,and begged to be let home. I may not have been on the maintained dose, but this has been tweaked further. 3 jabs a day ain't so bad.
Again, thankyou for making me smile!
Have a good day
Regards
Neil

Hi Neil

If your seeing Prof Meeran, you really couldn't be in better hands, please say hello to him for me, just say Sally from Cambridge.

Good luck for everything and the only advice I can give you if you feel yourself 'going', is lay down and control your breathing, thus slowing your heart.

Good luck

I just located this site - where is this site based? I am in the US.

kjseago
United Kingdom.

Hi,

Iam new member of the 'club'. I think what Sue mean with a more accurate scan is Gallium 68 PET/CT. I found quite a lot of info re it in the we. Also in www.renalcarcinoid.com there is sharing of Steve and Lucysnoid.blog from Lucy WIley. Also, there is a very good video of Dr Richard Baum in http://www.youtube.com/watch?v=Z0TlXH2dVi8&feature=channel. It have lots of info not only the scan but also the treatment.

My husband (neuroendocrine carrcinoma) is taking his last chemo on Cisplatin and Etoposide (6 cycles) and I am taking him for a scan using Gallium 68. So I don't have experience yet but from my understanding it is now the best scan for NET.

Hope all get the best in life!

Selina

HI

This is Steve from www.renalcarcinoid.com.

I have a ton of information on the PET Gallium 68 scan which I have done twice in Bad Berka Germay. Hands down, from someone who has done O scans, PEt scans CT scans and other scans, this is the best and easiest scan available! For those in the USA, it will be in Vanderbilt and Iowa in Oct Nov so you can wait to get it done.

Btw, the video on Utube was put up by Caring for Carcinoid Foundation after many discussions with folks It was orginally posted in Singapore CNETs and it is still there but it was that video that changed my life and completely turned my disease around.

http://www.renalcarcinoid.com/2009/09/caring-for-carcinoid-foundation.html

If you go to my blog, look at the posting of
http://www.renalcarcinoid.com/2009/10/prrt-post-health-status-scans-prt-and.html

to see what it PRRT has done for me....AMAZING. I was advancedc and ready to die and now my tumors are disappearing, with LU177. Forget what you hear about kidney issues. My one kifney has improved 20%.
Also, iof you so to the posting on the blog you can see the actual therapy. I did this to "take down" the cloud of mystery we in the USA unfornately have with this therapy (that is so effective) and the scan (that is the gold standard).

I have plenty of infor on gallium scans. Use the goggle search on the blog to find information and studies on it. But here are some links.

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Aug 19, 2009 ... This is information from a Md regarding the differences between Octreoscans (used in the USA) and Gallium 68 scan (used in other parts of ...
www.renalcarcinoid.com/2009/08/gallium-68-compared-to-octreoscan.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Jul 29, 2009 ... Gallium-68 (68Ga); The revival of an old Positron Emission Tomography ... THIS IS AN ARTICLE ON THE RESULTS OF GALLIUM 68 IMAGING (ADVANCED ...
www.renalcarcinoid.com/.../carcinoid-neuroendocrine-tumor-society_29.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...4) Bone - this usually occurs later in the disease course, and the GA 68 noted ... They do the Pet.gallium 68 scan for restaging and to determine the tumor ...
www.renalcarcinoid.com/

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Alternatively Ga-68 DOTA-TOC PET study on CD in DICOM format. ... The Ga-68 PET/CT and the other tests can be performed also as outpatient (patient must be ...
www.renalcarcinoid.com/.../bad-berka-prrt-information-required-and.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Nov 13, 2008 ... On a different topic: I'm looking for the location closest to the U.S. offering the 68-Gallium PET/CT to the public. ...
www.renalcarcinoid.com/2008/11/treatment-with-dr-moviglia-t-cell.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Item- Bad Berka uses PET w/Gallium 68 to determine tumors, and uptake, plus/CAT scan fusion. This is a much more advanced imaging and called the "GOLD ...
www.renalcarcinoid.com/.../prrt-information-erasmus-medical-clinic.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Below, as promised, are the Pet Gallium Scans and results of the 1st PRRT therapy of Lu177 DOTA ..... Gallium 68 compared to Octreoscan Imaging Informat. ...
www.renalcarcinoid.com/2009/.../prrt-scan-comparisons-may-2009-pre.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...Gallium 68 compared to Octreoscan Imaging Informat... Does Sugar feed Cancer Growth? Article from Medica... HELP! COMPLETE THE SURVEY AND DONATE TO ...
www.renalcarcinoid.com/.../news-on-steve-jobs-neuroendocrine-tumor.html

My journey thru Neuroendocrine Carcinoma Cancer Hell & Adventures ...The use of ga 68 for detection of CUP: discussion and study information: READ, it could save your ..... Gallium 68 compared to Octreoscan Imaging Informat. ...
www.renalcarcinoid.com/2009/07/detection-of-unknown-primary.html


There are plenty more on the site. Use the google search on the blog and it will only seach the blog. This is a one year labor of live for me hopefully help others and save lives...USE IT to help you....

My original trip to Bad Berka was in May 16 thru June 2 and you can see a number of pictures plus info on the center and the PRRT machine and therapy. I posted it so YOU CAN SEE IT and how simple it really it. In addition, again, if you look for study articles there are plenty on the blog!

Use it and empower youself...contact me anytime for further information and stay informed, proactive and alive! smm2367@gmail.com

Steve Murrah
Below is me, in my bed, doing the famous and mysterious PRRT....look at my scans.....this is a tumor killer!!!!!! the Best there is...see link below
http://www.renalcarcinoid.com/2009/09/bad-berka-tuesday-sept-18-2009-day.html