March 15, 2013 at 3:12 pm #631
We encourage users to introduce themselves to our community of NETs patients and family members. By sharing our experiences and stories we make our commuity more active and hopefully beneficial to each other, as we deal with our disease.March 15, 2013 at 3:25 pm #637
My name is Mark and I live in Lucan in Dublin. I was diagnosed with Carcinoid NET in 2011 with primary in the small bowel and multiple secondaries on my liver.
I had two stage liver surgery in St Vincents Hospital in Dublin to remove the primary and most of the secondaries. I am now on monthly injections of Lanreotide and I’m doing very well.
I look forward to meeting other NET patients and hearing their stories.March 19, 2013 at 11:02 am #648
My name is Colm and I live in Wexford Town. I’m 40 years old and I was diagnosed with Carcinoid NET in 2007, with primary in the Rectum within a small polyp, which was removed via the colonoscopy, at the time of discovery. For several years, I was monitored and followed up through various scans and CT’s.
3 Years later, in 2010, it was discovered that NETS were evident in the lymph nodes in the pelvis, which had also spread to the liver. I had a “lower anterior resection”, which to you and me is a resection of the bowel and rectum and I had an ileostomy / stoma formed. 6 weeks later later, I had a liver resection in St. Vincents. I was fortunate enough to have had the stoma reversed 6 months later and all has gone well since in that regard.
I’m on Lanreotide injections every 28 days, however, my tumors have shown progression since the surgeries, and have re-appeared in the liver and have progressed to the pelvis and spine.
I’m a firm believer in positive thinking being a major tonic in tandem to your medical treatment. I also look forward to meeting and sharing with others in this forum for the benefit of all NET patients in IrelandMarch 20, 2013 at 12:16 am #671
First, I would like to thank all that was involved in setting up this web site. It is great to be able to keep up-to-date with what is happening in Ireland.
My name is Peter from Co Louth and I was diagnosed with NET Carcinoid in August 2011. For 62 years I never had need to go to a hospital but that changed suddenly in 2010. I was admitted with a severe pain in my chest in September 2010. The doctor on call was on the opinion that it was gall stones. After an ultra sound test, CAT and MRI scans, a melon size tumour on my liver was wrongly diagnosed, as being a FNH (Focal Nodular Hyperplasia) on my liver. Despite the assurance that it was non-malignant and harmless I continued to lose energy and started attending a Heart consultant. After a series of the usual modern cardiac tests I was told that my heart was OK, perfect for a 64 year old, and I was then referred to a rheumatologist. I and my GP were worried about what was happening and my GP advised me to get a second opinion. When I got the opinion of a retired consultant who had minimal test or diagnostic equipment he advised me that there was severe damage being caused to my heart. He also stated that if I did not get my heart seen to and what was causing the problem, I would need a heart transplant within twelve months. When I returned to my heart consultant I had some tests repeated and an additional test carried out and was eventually transferred to an Oncologist. Very quickly I was diagnosed with Carcinoid syndrome. The location of the primary tumour was never found.
In the 10 months between the mis-diagnosis of my tumour in a public hospital, and despite attending a heart specialist in a private hospital, my quality of life was deteriorating drastically. I found it difficult to stay awake, had difficulty lifting my feet properly and had so little power that I could not close my seat belt buckle. I lost over 25% of my weight. An eco-cardiogram of my heart showed that it was down to 65%. The cancer had spread to my lymph nodes and several bones in different areas of my body. The cancer was too far advanced and had spread so much that operations were impractical. Chemotherapy was not effective, so I was put on palliative care.
I get a four weekly injection of SANDOSTATIN LAR 20MG to control the chemicals that was damaging my heart. At the same time I get an intravenous dose of ZOMETA to strengthen my bones. After the first few months of this treatment my health has improved to an extent that I can now stay awake for most of the day. My energy has improved slightly.
The advice I would give to anybody that is diagnosed with NET tumours is to draw up a list of questions to ask their consultant. I send difficult questions to my consultant before I visit him. Read as much as you can about your condition and patient’s accounts of their illness. I found that once I got over the shock of changing from being a very active person, to a zombie style existence for a number of months and now having a reasonable standard of living that I can accept that it is up to me to fight for what is best for me in the years I have left. I found that now that I can’t work I have time to reflect on the good life I was lucky enough to have for almost 60 years and only wish that I could be less bashful and name ALL that made my life to date so happy.
Two months after my diagnosis I was hoping to live to Christmas. A year after my diagnosis I was looking forward to another year. I hope that in five years after my diagnosis I will be looking forward to the next five years. This is because of a motto I seen for patients with serious illness; “Die with it rather than because of it.”
March 21, 2013 at 6:27 pm #675
tom o dMember
My name is Tom, I’m from Tipperary. For a number of years I noticed some weight loss, intermittent diarrhoea and increasing fatigue, for all of which I found what I thought were sound excuses, but I was wrong. I was diagnosed with Carcinoid NETs in 2007. The tiny primary tumour was a midgut carcinoid and I was sent to Uppsala in Sweden on the E112 form for surgery.
Half my liver was removed and other metastases were treated on the remaining lobe , infected lymph glands were also taken out, as well as the primary. I returned to Sweden for further metastases treatment some weeks later, in early 2008 and it was decided to put me on a monthly injection of Sandostatin LAR, 30mg.
Since my treatment I’ve done really well. My weight is stable, diarrhoeia is well under control and the energy levels allow me have a good quality of life.
Up to the Spring of 2012 I returned to Sweden twice per year for monitoring; now I get all my tests done in Ireland and I’m happy with that.
Meeting-up with other NET people and hearing their stories gives me a real lift because as our condition is chronic, it’s only to be expected that we all need support from time to time. As I see it we’re lucky there are so many treatments for our condition so we have every reason to feel positive.April 3, 2013 at 4:04 pm #680
Hi my name is Mary, I was diagnosed with having Carcinoid Tumors in my right lung in 2012. I was operated on the 5th June 2012. I had quarter of my right lung removed plus a section of my bronchial tube as there was a tumor there plus a tumor in my chest area removed. I also had lymph nodes removed. About 6 weeks after my surgery I became very ill again and started Sandostation injections, which I inject myself twice a day at home.April 4, 2013 at 8:27 am #681
Hello my name is Cheryl, firstly congratulations on the new network and website. My father was dignosed with NET in July 2010 with primary in the pancreas. He then had whipple surgery, followed by 3 months of chemo. 1 year later after a scan it was found it had spread to the liver. Another 6 months of chemo followed then it was decided that a liver resection could be done. Following the liver resection and another scan 3 months later a number of small tumours were found to have reoccured. At present my dad is on temodal and is finding the side effects very severe for example weight loss, rash, diarrhoea and vomitting. This drug is apparently only newly being used on NET tumours. Is there anybody who is currently on this treatment?
Also he is being treated in Tallaght hospital at the moment. From reading this website I have found out St. Vincent’s is the main hospital in Dublin for treating NET’s. For this reason I was wondering if we should look at getting a second opionion as in our experience it has not been readily offered by his doctors so far.
Looking forward to hearing from anybody out there.June 5, 2013 at 6:38 pm #688
I’m sorry to hear about your dad and I hope he is keeping reasonably well.
I’ve never heard of other NET patients being treated with Temodal so can’t help with that query. However, I do believe your dad should have a 2nd opinion with the guys in St. Vincents who have been treating NETs patients for a number of years now. Prof. Donal O’Shea currently heads up the NETs unit in St. Vincents there so it would be worthwhile asking your dad’s consultant to refer him. As it is there are NETs units in London and Sweden who have many years of experience in dealing with all types of NETs. I currently attend St. Vincents but I have been to Sweden (refered by St. Vincents) for surgery and treatment. I hope this helps and if there’s any more information or you need to discuss, please let me know.
CarmelJuly 1, 2013 at 6:41 pm #700
Thank you so much for your reply. We have found out that my father’s case is being discussed in St. Vincent’s at their weekly meetings with Tallaght Hospital. I hope you are keeping well and thanks again for sharing your information.
CherylJuly 19, 2013 at 4:44 pm #706
Just to update my last post, I was still quite ill with Carcinoid Syndrome on the twice a day Sando injections so I got in contact with my Cancer Care nurse and my medical team decided that it might be better for me to go on Sando Lars which is every 28 days and I have had 3 injections so far and I feel a lot better.August 13, 2013 at 12:00 pm #776
Normally I open this forum to see if there are any new stories about patients who are inflicted with NET or Carcinoid tumours. It is nice to know other patients history and details of their treatments and their response to these treatments.
I am disappointed that more members are not making use of this service because I got great help from members when I was trying to arrange a visit to Uppsala in Sweden. I would like to encourage more members to introduce themselves, because irrespective of how your treatment is progressing as we are all in the same position trying to improve our position as best we can.
What caused me to reply today was the last message (774). In my opinion this type of message with its links to advertisements is not what was envisaged when the Forum pages was set up. Before that message appeared you knew before you went into the related pages that any new message would be about NET or Carcinoid patients.
This is only my opinion
PeterAugust 13, 2013 at 12:22 pm #779
Thanks for posting. You are right that we are experiencing a lot of spam postings at the moment. We are trying to delete these as they appear but unfortunately we do not have the resources to monitor the site at all times. As you know, we are NET patients ourselves trying to keep a website going with minimal costs while trying to do our day jobs at the same time.
Signing up to the forum is an automated process at the moment. We need to determine if we can introduce an approval process even though this is slower and more cumbersome, to prevent spammers from having access.
It is disappointing that more people are not using the forum and it would be great if everyone can encourage more patients to use it, as we are all helped in our fight against the disease by hearing other patients stories.October 9, 2013 at 4:42 pm #802
Hello to fellow carcinoid patients. Born in Dublin I live in Paris and was diagnosed (not without errors and difficulties) in April of this year with carcinoid cancer. The primary tumour was on the appendix with secondaries on the liver. I was operated on end
-July for a right colectomy etc., and my gall bladder was removed. It took time to diagnose me for carcinoid over here as the cancer is so rare and I was convinced I had irritable bowel syndrome. I feel very well since I have been on Sandostatin Lar, no more flushes or rushes to the toilet. I got over surgery quite quickly with no side effects. For the moment they are not planning to treat the liver secondaries as they are inoperable so I cannot have a liver resection. Before they decide anything here my file is submitted to the Beaujon Hospital centre of excellence ( where Professor Dermot O’Toole practised while he was in France). Just for information, not all treatments are available in France yet either. Good luck to fellow patients. My motto now is carpe diem. Anyway, there are so many long-term survival stories why not us too.October 9, 2013 at 8:28 pm #803
hello, delighted to find others to compare notes with and I hope to meet you at the NET meeting in Kilkenny in November. So glad this site is now in action and thanks to all behind the venture.
Briefly, I had Whipples operation in Dec. 2008, then an unexpected (a huge bleed) crisis which resulted in an ileostomy and soon after that an abscess on the liver so right side of liver removed. NET was in pancreas but had spread to other bits of gut and to liver. A lot of surgery………… And another op in 2011 to remove more secondaries in the liver.
Have been on somatuline 120 g every 28 days since Jan 2012 and hope that is keeping things under control especially one spot on liver which is in bad place for an operation. New problem is that my blood sugar levels have gone up as a result, so the threat of diabetes is there and has to be monitored. Does anyone else have this problem with the lanretide injections? By cutting out sugar as far as possible I’ve so far managed to keep the sugar levels ok. I really don’t want to have to take insulin unless absolutely necessary. Keeping up my weight is another struggle – any ideas? Ileostomy doesn’t help with that. I do get through a lot of Creon enzymes to make up for missing half of pancreas but don’t absorb fat.
I find it nerve-racking coming up to scan and check-up dates, no doubt that’s the same for us all. I’m looking forward very much to being in contact with this group. It’s a great idea as I’ve felt very much alone.
In anticipation, thanks
Rosamond (in Dublin – treatment and followup St Vincent’s Hospital)October 16, 2013 at 12:57 pm #810
I was on lanreotide injection every month but it was stopped a few months ago due to bowel and stomach issues in general. I am very lucky in that all my visible tumours were removed with surgery so I have the possibility to wait before deciding to go back on the lanreotide or to try another alternative. I am scanned regularly to check for any new tumour recurrence or activity.
Anyway, I think your issue with blood sugar levels is very common and one that everyone on lanreotide has to be aware of. The National NET Patient Day is being held in Kilkenny on Saturday 9th November. This will be a great opportunity to meet other patients from around Ireland and to ask the leading NET doctors any questions or queries you have.
All the best,
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