About Eric and Carcinoid Cancer
For access to Eric’s original pages and story please click here
Eric was diagnosed with Carcinoid Cancer – a rare form of cancer – in May 2004 when he was being investigated for a gallstone.
One month later he was under the knife for 10 hours having 4 kgs (approximately 9lbs) of tumour removed from his liver along with 50 cm of intestine and a repair to his diaphragm where the tumours had invaded.
This blog is an account of his journey.
Some very basic information:
Eric is now 65 and married to Leonie. We live in the beautiful south west of Western Australia and we founded and work in a magical business called Moon Haven where we create luxurious herbal and aromatherapy based soaps, lotions and potions.
Our retail store is crammed full of interesting things and we have people come from miles around to visit and just to see ‘what’s new’.
Eric was born in California but has lived in many places around the world but we think he has finally settled in Australia. Eric is the father to three daughters, step father to two sons and grandfather to seven grandchildren – all of whom he is exceedingly proud.
While Carcinoid Cancer is certainly part of his (and Leonie’s) life it does not define it and we tend to look upon it as an inconvenience that needs to be dealt with in between and while the real living continues.
Eric has been fortunate in the medical team that looks after him.
From his surgeon Dr Harsha Chandratna, to Nuclear Medicine’s Dr Harvey Turner as well as the marvelous teams that support these good men, Eric is surrounded by good people with good knowledge of this cancer and how best to treat it. And to top it all off … the treatments Eric is undergoing are all free – as Australia has free medical coverage for all of its citizens and residents!
Hi Eric
My name is Kareena and I have recently found out that I had a Carcinoid in my bowel which I have had removed and my liver is full of the tumours. I am participating in the CLEMENT 2 study with Dr Turner. Would love to hear from you as I know no one else with this sort of cancer.
Hey Eric!
I too have Neuroendocrine tumours. Pancreas with Liver mets…
I am 35 years old and live in Perth, so I will def drop down and buy some sopap next time I’m down that way.
I was involved at Freo hospital for a while, but tumours didn’t stop growing.
I have two large tumours approx 7cm each, plus countrless in between. I also have one on or in pancreas at about 7cm.
Anyway, I look forward to reading your blog as it come out
all tha best
Peace
Hi Eric,
Very sorry to learn you are not well. The Oncologist that has looked after me in my Carcinoid journey is, Dr Siobhan NG at The Bendat Cancer Centre, Suite C203, 12 Salvado Road, Subiaco. Dr NG, during my treatment has been in close consultation with Dr H Chandraratna and Dr Harvey Turner at Fremantle Hospital. I have the utmost confidence in all the mentioned Doctors and am greatful beyond words for the care I have received. Wishing you the best of every thing Eric and a speedy recovery. Seasons Greetings to you and Leonie and may next year see a great recovery in your health.
Sincerely,
Des Bailey
Hi Des,
Dr Andrew Dean at The Bendat Centre is my onocolgist now. Another fantastic referral from Harsha!! Bless him and the many!
Hi Eric,
I am struggling with carcinoid cancer and carcinoid syndrome for 2 years now…i found your blog with google because i have some strange things going on with my eyesight…blurry vision with flashes and floaters and i am worried that it’s related to the carcinoid cancer…did you, or are you having the same symptoms..?
Sincerely,
Richard Sloot.
Hi Richard,
In my case I have two carcinoid mets in my left eye orbit. One on the lower muscle and one near and on the optic nerve. This is extremely rare occurance but it certainly happens. It took Gallium68 wholebody PET scan to find them. I have not noticed flashes or floaters but if the optic nerve is affected it certainly could produce such things I would think. Best talk to your oncologist about it and getting some sort of scan of your head methinks.
Best regards, Eric
Hi Eric,
I am seeking PRRT in australia. Who and where do you recommend? I live in Hong Kong now.
thanks
Liu
Hi Eric,
I am a Perthite and my story is similar to yours, Back in 1995 I was jaundice and after about two years they found I had a carcinoid tumour in my bile duct I had to have a whiples procedure which they removed the gall bladder have my pancreas my juridium (forgive my spelling) and bits around and put me back together. at the same time I was diagnosed with Wilson’s disease which causes my body not to extract copper but to store it in the organs I have to take treatment for that for the rest of my life. Last week I had an appendectomy and they found a new carcinoid tumor and I am off for treatment for that over the next weeks I guess. My carcinoid seems to originate from another condition that I have called neurofibromatosis which is a neurological disorder. I am a little nervous as over the next few weeks it seems a little overwelming
Sorry Eric my last post slipped and I knocked the submit. Anyway I just have to wait and see whats gonna happen. I just want to say thank you for sharing your story to us all.
Blessings to you mate.
Sorry for my spelling.
Doctor just called me 3 hrs ago that in my removed lymphatic gland (week ago) they founded carcinoid…
I don’t have any symptoms J just had painful node and it didn’t go away after 2 weeks of antibiotics.
I am now in Saudi Arabia (working) but I am Australian.
I don’t know what to do ?
I am loosing my mind.
Hi George and Andrew,
Good luck with this journey… while it can fell very overwhelming when we get the diagnosis… please remember that you usually have time to consider your options … so please look around… talk to your doctors… do your research and then make a decision as to how you want to proceed.
After talking with many carcinoid and NET survivors you can generally manage the disease process to live a ownderfully full and happy life with time out ocasionsally to deal with the cancer itself.
Warmest regards
Leonie and Eric
Dear Leonie & My Hero,
We are constantly thinking of you both and send you both our love
Neil & Jane
Hi there Eric and Leonie – I trust you are travelling well right now -
happy and smiling. I am, despite two PET scans showing spread to
the lungs and pelvic bones, aso many lymph nodes in the abdomen.
I had these done early in the year and my Oncologist – Dr David Ransom -
has me under the care of Dr Harvey Turner. I had three of these lutetium
treatments 7 years ago, and I am sure it is these treatments which kept
everything “stable” for about three years. I am in no pain, for which I am
very grateful. Maybe some Nurofen now and then for tummy cramps which
come just after my Sandostatin injections. I hope this is encouraging, especially for you – Geoff and Andrew. I am in my 12th year of living with
carcinoid. My wonderful oncologist tells me he has quite a few patients with
carcinoid who have files as thick as mine – so new treatments are
becoming available all the time. I plan on being around for many more years.
I hope all is well with you Eric, and that you are over the set-backs of
2011, enjoying your lovely little corner of the world. God Bless you both -
keeping you in my thoughts and prayers. You also Geoff and Andrew
Vicki
Dear All, my brother has carcinoid tumors in his left lung. In 2009, the dcotors removed a 6lb carcinoid tumor from this chest, it appears the tumors have returned. The doctors put him on Octreotide but it has not been successful. I am looking for any information, referrals, advice on how to help him. The doctors have given up on him, I refuse to do the same. I know there must be some help out there…would appreciate any thoughts, suggestions, advice. We live in San Antonio, Texas.
God Bless,
Carmen