But whether that's good or bad isn't yet clear
I was 35 years old when diagnosed and have very severe syndrome - have to keep increasing my Sandostatin treatment to manage symptoms. However, my tumours are still too small to show up on any scans. I am about the turn 41 years old. My mother got diagnosed 2 years after me (they stumbled across hers when she was having surgery for an ulcer). She does have one that shows up on scans that they have not been...
I am on 40mg Sandostatin (Octreotide) every 3 weeks (was initially started on 20mg every 4 weeks but has to keep being increased to stay effective). I am not sure if your insurance company would limit dosages or frequency, but we follow the pattern of my symptoms - first increasing frequency to 3 weeks, then when that no longer worked increased the dose. My next option is Lanreotide (Somatuline Autogel). Th...
I haven't been on lately so just saw your post.
Has your son had a colonoscopy? I am making an assumption here, but I would have thought that if he is passing blood, something would be visible on either colonoscopy or capsule endoscopy (when you swallow a camera so they can see into the small intestine - a common place for carcinoid).
Blood serotonin was the only marker for me that was elevated.
Claire, I agree with Tine1, definitely keep pursuing doctors and get to a specialist.
MRI is not good at visualizing carcinoid (that is written extensively in the literature), so MRI should not have been used to rule it out. If they wanted more confirmation than the Octreoscan they should have referred you for a Gal 68 PET scan (I am not sure how hard it is to get referred for one of those where you live).
Obviously there are probably a number of possibilities for your symptoms, but I think you are wise to consider carcinoid. In other words, don't want to worry you that you might be right, but also think it is important not to ignore it. The fact that you are already searching for possibilities online tells me that you feel something is not right.
I first started flushing around the age of 18yrs, so must ...
Hi Kathy, I have different looking flushes depending on the trigger. One of my most dramatic flushes is triggered by leaning forward. My hypothesis is that I am squishing something causing it to do a hormone dump.
It is still worth doing a colonoscopy - it is just that a clear colonoscopy doesn't guarentee no cancer. I still get one every few years. The last one I had the gastroenterologist (who had initially told m...
Also just seeing this message for the first time.
Where are things up to with you now? It is such a horrible and confusing time when you don't know for sure what is causing what is happening to you. Of course it is going to make you emotional, which might also make your symptoms worse.
There is a wonderful support group in Sydney called the Unicorn Foundation. I would recommend that you look them up beca...
Sorry Kathy, I have not been on in a while so only just saw your message.
That post was from several years ago and Tassie is where the labs in Queensland used to send them. Now I think they do most of the carcinoid tests locally.
Sorry I did not see your post sooner to clear up that confusion. A lot changes in the medical field in a couple of years!
Kind Regards, Lauri.
Hi Karen, I haven't been on in a while and am just catching up. I read your post. Since I was last on here they still have not found my tumours. What I will tell you is that the only thing that has made these past 5 years bearable for me is being on Sandostatin injections. I have had to have some dosage increases over the 5 years, but when the levels are right I can be almost symptom-free (as long as I don't have alc...
Is the doctor putting you back on the Sandostatin injections? That is all that I can suggest. Even after all this time, and multiple Ga68 Dotatate PET scans, my tumours are still hiding. Injections of Sando are my only treatment option at the moment. If I were you I would be asking to be put on long-acting Sandostatin, and having short acting rescue shots for in between as needed. The only other thing I c...
I have Carcinoid Syndrome but no tumours located. I am being successfully treated with Sandostatin LAR. I am very thankful to God for the many miracles that resulted in my diagnosis.
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