December 2, 2013 at 4:37 pm #856
My name is Joan and I live in Co. Cavan. I was diagnosed with 2 Carcinoid Tumours in my Upper Stomach in early 2000 and I have been attending St.Vincent’s for both my Carcinoids and Diabetes Type 1 since then. Fortunately Prof. O’Shea had been my Diabetic Consultant since he moved back to Ireland and he then took over my Carcinoid Care. I have an OGD every year (very well done by Mr E McDermott) just to keep an eye on things.
It seems that my Tumours are ‘freaks’ and lately diagnosed as ‘Low Level Cancer’ much to my delight.
I have recently been put on Sandostatin Lar, 1 jab every 28 days after a couple of weeks on Octeotride 3 times daily. Not much in reaction to it, some extra care needed with my Diabetes and some tiredness and loss of appetite.
I am well aware that my condition is now where as severe as the rest of you but it is still very good to be able to join in with you. In 2000 there was no information on the Internet and nobody to talk too..it felt lonely… So a big hello to you all!!
JoanDecember 16, 2013 at 12:35 pm #860
Hi Joan, I’m so pleased that there are other members to chat to. I was just wondering to you have Carcinoid Syndrome?
MaryDecember 19, 2013 at 3:37 pm #862
So good to hear from you..In 2000 I spent 3 weeks in St.Vincents under Mr E McDermott and the surgical team. They could not understand how I came to have the 2 tumours in my upper stomach and had no primary..eventually it was decided that the tumours are ‘freaks’ caused by a combination of Severe Gastritis and a low acid content in my stomach. It was decided that I would die with them rather than of them and that an annual OGD and biopsy would be all that was needed. At that time there was no information on the internet other than an American woman who had Carcinoid Syndrome and had become the only expert on the subject, to the point that American Oncologist’s called on her to attend lectures.
As I was not diagnosed with C.Syndrome that left me with no one to talk to and whilst I sort of believed the Doctors, because I knew of no-one like me I was left uncertain and unsure.
Four years ago I started sweating badly thro’ both day and night and also bad nausea to the point that eating was difficult, not good when I also have type 1 diabetes. One good side effect is that I have gone from 77kg to 60kg in that 4 years!! After numerous blood tests and scans I was told I would just have to live with it. However in July I was called into St. Vincent’s and put on Octeotride (3 jabs daily) and then on Sandostatin Lar (1 jab every 28 days which my husband takes great delight in giving me!! ouch!!) and the nausea has reduced although the sweating not so much). Some doctors have told me the nausea and sweating are caused by the Tumours but I don’t think that Prof O’Shea believes that and is still convinced that my tumours are ‘freaks’ and un-related to Syndrome, neither does he think that removing the tumours will stop either the sweating or nausea, I have finally come to believe that they are not related and that the Sandostatin Lar is just his way of trying to help..
I have now been referred to Prof O’Toole and will see him in April next.
Sorry about all above but it’s been sort of sitting there waiting to burst out…how about you telling me about your-self, have you Syndrome and for how long??
Merry Christmas and an HEALTHY New Year
JoanJanuary 17, 2014 at 5:57 pm #873
Hi Joan, sorry for not answering till now but I have been very ill with Carcinoid syndrome and nearly died when I went into Carcinoid crisis for the second time. I’m getting Octreotide body scans done next Tues and Weds as they think the Cancer had spread. I will be returning to see my Oncologist on the 3rd of Feb for the results.
All the best
MaryJanuary 19, 2014 at 12:08 pm #874
Hello Mary, I am so sorry that you are having such a terrible time and hope that the concerns they have are not justified. I have had nuclear scans over 3 days a couple of times and although they take a while to do they are, in them-selves, not bad. I will be thinking of you this week and hoping you pull through, please, if you can, let me know how you are getting on. Who is your oncologist and which hospital are you attending?
JoanJanuary 20, 2014 at 4:51 pm #875
Hi Joan, thank you for your kind words. I’m attending the CUH my Oncologist is Derek Power, I will be seeing him on the 3rd of Feb. How are you doing now Joan?
All the best
MaryJanuary 20, 2014 at 10:38 pm #876
I’m due my next Sandostatin Lar on Friday, the last jab didn’t do as good a job as the previous and I’m wondering if maybe the 30 dose would be better than the 20. My diabetes has improved slightly the last few weeks but I still can’t tell if the sweating (which is getting worse) is related to the diabetes or not, I can no longer tell if my blood sugars are too low so am pricking my fingers quite a lot, also I have no appetite and feel nausea most of the time. Still I am due to see Prof O’Toole in early April and maybe he will be able to help.
Sorry to dump that on you..we have snowdrops in our garden and the beginning of the growth of the daffodils so now I am starting to look forward to an early spring..
Take care of your-self, best wishes
JoanJanuary 28, 2014 at 5:36 pm #939
Hi Joan, I’m so sorry to hear that your having a tough time. Yes, I think the 30 mg dose would be a lot better than the 20 mg. I’m on the 30mg dose and was doing well on it for a while. I hope you feel better soon,
MaryJanuary 31, 2014 at 10:18 pm #941
I haven’t used my computer this week so have only just read your reply, hope that your scans went O.K. and that you have good results on Monday. Please let me know how you get on..I will be thinking of you.
I didn’t get to the meeting last November and have just received an email to say details of it are now on this site, have had a quick flick through it and am now going back to play Prof. O’Toole’s video, nice to see what he is like before my appt. with him.
How are you feeling now? I notice you said that the injections had worked for a while, does that mean they are not working now and, if not, have they put you onto anything else? What exactly is Carcinoid Crisis? I haven’t seen or heard of that and are you feeling any better?
Please keep in touch
JoanFebruary 15, 2014 at 11:37 am #943
Hi Joan, I’m so sorry for not being in touch but I have a lot on. My Mum passed away on the 18th of Jan, she was only 65 years old. On the day of her burial I had to go to the hospital and have the Octreotide/radiation injection and then leave the hospital attend my Mum’s burial and afterwards return to the hospital for a half hour scan. The following morning I had to go to the hospital for the 2 hour full body scan.
Carcinoid crisis is when you are in Carcinoid syndrome for too long and it gets worse and life threatening. In my case I was ill for a few days with very high blood pressure and I was flushing very badly for hours at a time. Then I started getting really bad diarrhea constantly, I kept drinking water and taking Imodium but it was stopping. The water was just pouring through my bowels. After 26 hours I was in bed unable to move and my partner noticed I was going delirious, he rang South Doc but they said they wouldn’t be able to get a doctor to me for at least an hour so my partner had to ring an ambulance. When they came and checked my vitals my temperature was 40.2 and my blood pressure was 178 over 135. This is life threatening. When they brought me to hospital started me on IV fluids with potassium in it and 500mcgs Sandostatin 3 times a day. I was seen by Oncology who said that I must have more tumors. I was in hospital for 5 days.
Yes, I was doing ok for a while on the 28 day Sandostatin Lar, but I still was getting the coughing, flushing and occasional diarrhea. I have been seeing Dr. Power who ordered the Octreotide body scans. They came back clear. He said the I will have to travel abroad for more tests as they don’t have the scanners in Ireland to do tests I need have done. I will be going back to see him on Mar 3rd to see where I must travel too.
All the best,
MaryFebruary 23, 2014 at 2:29 pm #944
I have been having trouble logging on to this site for a few days and have only just succeeded. How are you feeling now? have you gone back to normal (or what for you is normal!!)? The only other hospital abroad that has been mentioned is the one in Sweden and that has some really good revues, only another week and you will be given the information you need. It’s really excellent that the scans came back clear..no new tumours..you must have been so pleased. It was only the day after me asking you what Carcinoid Crisis is that I read about it, also about people like us on Sandostatin Lar needing to carry a card stating this in case of an accident. It seems there isn’t one available in Ireland yet but there are shops that make cards so I’ll have to find one and get one made.
I had an appointment with a new dentist on Friday last in Enniskillen, our last dentist committed suicide towards the end of last year and I waited until my husband had seen this one before I made an appointment (just to make sure he was good!). Anyway no problem with him he’s really nice and understanding of my fear of him..No point saying to my-self that dentist’s don’t hurt these days I still can’t accept it and when I come out keep telling myself how brave I am!!! coward to the end..
When this site was down for a week or so I went on the UK Net site which has been going for longer than this one and has many many more people on it. It was quite interesting reading their letters, there was even one from the USA asking for, and getting, advice.
Let me know how you get on at the Clinic and best wishes
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