December 21, 2013 at 1:50 pm #866
Hi,my dad has carcinoid tumors,it started in the bowel area which was operated on but no follow up treatment or any information about this type of cancer was given to him,since then he’s had chronic diahrea and weight loss and flushes, he was admitted to hospital and diagnosed with carcinoid tumors on liver. He now under the care of St. Vincents who have been great.He started with daily injections which improved his symptoms but since starting montly injection his symptoms are back again. We have since learned he also has tumors on the lungs. He has to go to Sweden for treatment and I was hoping if someone has travelled here for treatment could they give us some information on what he is to expect.Thanks, AlisonDecember 28, 2013 at 4:36 pm #870
Sorry to hear that your dad has more tumors in the lungs.
I have had four treatments in Uppsala Sweeden.
This treatment i had was very doable, on my first visit my husband traveled with me and my doctor at the hospital was Dr Dan Granburg,he is a really good doctor .I was told not book a return air ticket as they (Dr Granburg) said they would not be sure when the treatment would start but as it turned out i started my treatment the same day .Treatment only takes 30 to 40 minutes (for me anyways) and then was scanned which takes a while then i was put into isolation for 24 hours so i recommend having some reading books etc to pass the time as you cannot leave your room by the way the room has en-suite and the nurses are wonderfull.I had scans again the next day and then allowed out,we stayed in the Clarion Hotel which is a bit away from hospital (20 mins walk) All the hospital have good english which is a great help..Be sure to have layers of clothes not heavy clothes as it can be very cold .If you want to contact me 0860832823 also check out unversity hospital Uppsala .By the way i had to stay in Uppsala for nine days on my first treatment and last treatment and three days on other two treatments
Best of luck
EstherFebruary 4, 2014 at 1:09 pm #942
I am sorry to hear about your dad’s illness. I hope he gets all the treatment, help and support that he needs. A friend of mine has just been diagnosed with carcinoid cancer and I was wondering what the situation was in relation to treatment in Sweden, seeing that you say your father has to go there for treatment. Does the E112 scheme apply for treatment abroad seeing as treatment is now avaiable in St. Vincents? This is all new for us so I am trying to find out as much information for him that I can so he is fully aware of all his options.
Thank you so much,
TeresaMarch 5, 2014 at 11:51 am #945
There are many different treatments and not all are available in Ireland, not even in St. Vincents 😉
It depends on the type of carcinoid cancer you have, so if they don’t offer it here, the scheme should kick in.
Also, tell your friend to go to Facebook and search for carcinoid cancer and look for Groups, there are at least 6.
Lots of information there & the opportunity to ask questions from people that actually have carcinoid cancer.
EoinMarch 27, 2014 at 8:13 pm #953
How did your friend get on? There are specialist NET centres in St Vincents, Mercy Univ Hospital Cork and Galway University Hospital. Many patients are treated in other hospitals, often with referrals for opinions from the specialists in these hospitals.
As Eoin said above, the E112 Treatment Abroad Scheme is to provide access to treatments in other EU countries that are not available in Ireland. Your friend may be treated perfectly well here in Ireland, through surgery, RFA, chemoembolization, etc and may only need to travel for other treatments such as PRRT if that is deemed necessary later in their treatment plan.
MarkApril 24, 2014 at 11:19 am #981
Hi Teresa so sorry for late reply, my dad didn’t have the PRRT treatment in the end as there was a problem with his kidney so too many risks involved. He’s just had hid third chemo embolization on his liver which was done here at Vincents hospital. Has your friend been referred to St.Vincents nets department, I really advise that they should me. Any treatments that can’t be done in Vincents they will organise for it to be done in Uppsala Sweden, which is one of the top places for Neuroendocrine. Is your friend taking monthly injections to help with symptoms. I would advise your friend to go with St.Vincents Nets clinic or at least make sure her oncologist is working on the advice from them. There are various treatments to try, PRRT, embolization etc. I wish your friend well, I’m still trying to learn as much as possible about this type of cancer. Good luck to your friend xJuly 14, 2014 at 1:28 pm #987
Hi to everyone just popped in as feeling pretty low. Found it interesting
reading previous comments under heading ‘net survey’ regarding symptoms v ( possible ) side effects. Think Mark/Chris were discussing ! not sure.
Anyways I am guessing my low mood attributed to couple of things, first & foremost because this can be a lonely road at times. I must confess I battle with myself more frequently as time passes by. The uncertainty of the possible paths those with Neuroendocrine Tumours find themselves in can feel like a real lottery. Typical/Atypical/treatment/no treatment/watch wait approach/octreoscan/GA68 scan/ both of which I believe are to confirm if tumours have receptors ? Can any one confirm my understanding of those scans is right! Love to be wrong ha ha !! Gonna say bye for the minute as wow, big tears coming, this sure is a low day.
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