December 19, 2013 at 5:02 pm #865
I have been on monthly injections of Sandostatin Lar 30 since July. My liver secondaries have not grown, but I have developed bile duct problems. Has anyone else had similar side effects?January 29, 2014 at 6:57 pm #940
Hi Carmel here,
I understand and have seen posts on the carcinoid.org website that this
can occur to some patients on sandostatin. It’s also pretty common
for patients to develop gallbladder problems. When I was a patient
in Sweden the medics told me that in the past patients had their
gallbladders removed before starting sandostatin treatment. They
had planned to remove my gallbladder whilst I was there for major surgery
in late 2009 but unfortunately the operation was complicated and they
abandoned that plan. I’m sure your Doctors are keeping an eye
on the ducts via your CT scans so you should ask their advices on
how you should proceed and any likely medical issues for you.
Best regardsOctober 3, 2014 at 2:33 pm #1011
Hello Carmel, you wrote to me via the site some time ago and gave me great support and advice so I have not forgotten you. I am still doing fine and hope that you are also keeping well. No more talk for the moment about bile duct problems. I guess either they are not important or the problem has reabsorbed itself. I had one bad experience with a faulty administration of Sandostatin this summer and immediately had the old symptoms return, but only until I had the next shot! Vive Sandostatin is all I can say. Best wishes.October 4, 2014 at 7:00 pm #1014
Hi there, delighted to hear you’re doing so well.
I’ve had to come of the sandostatin since February
due to bile duct issues and even in that short space
of time, the tumours on the liver, which had been
stable for 3 years have marginally increased
since I’ve been of the sandostatin. We will see how
it goes but it does go to show how well sandostatin
works for us. Hope to see you at the conference on
November 8th, we are hoping for a good turn out.
Best regards CarmelOctober 5, 2014 at 4:56 pm #1015
Hi Carmel, am very sorry you had to stop Sandostatin and hope they can treat the problem so you can continue later. I decided to come over to Dublin for the Conference after receiving news from you, and look forward to meeting you. Even if my treatment is not in Ireland it will be interesting to get updates on what is happening at home. I clicked on the link to reserve for two and hope it worked. I could not see the Agenda for the Conference very clearly on the website. And the address is not given. I guess it is on the campus of St Vincents? Best wishes again. Helen
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