Yep, that’s true, its about time I paid more attention to my blog. When I last wrote we were in discussions about starting a series of Lanreotide injections. There was some difficulty in finding a doctor to write the script and I finally contacted my original surgeon, Harsha Chandraratna, who was very surprised to hear I was not on sandostatin or lanreotide. His concern has always been potential damage to the heart valves and was immediately keen to get me started again. So about five months ago I started on monthly injections of 60mg. What I was noticing was about the 3rd week my syndrom symptions would begin to reappear, so I felt that probably the dose wasn’t high enough. Last month I told Harsha about that and we agreed to increase the dose to 90mg. But before doing that he wanted to run some new scans on me and didn’t want the lanreotide to interfere with the scans so its been about 7 weeks since I had an injection and I definitly notice it. I was enjoying an occassional wine or beer, but I stopped that when it was obvious that it brought on increased flushing.
Anyway, last Friday I underwent a neck to groin CT scan and a head to toe Gallium-Octreotate PET scan for the first time. Interestingly, Harsha has asked for an identification of any tumours outside the liver. We won’t know the results for a few more days, but when we do you readers will too.
What I have noticed recently is an apparent change in my metabolism. I can get shiveringly cold for almost no reason (besides it still being winter here). I can eventually warm up with extra covering and warm drinks, but it can be quite severe at times. The other thing I am watching is a gradual weight loss. I am not dieting, but nor am I eating big meals. I have plenty of extra weight to lose, so its not a bad result, but somehow I feel the two things are related, hence my opinion of a change in metabolism. Interesting.
As I said as soon as I know something more I’ll let you know, meanwhile take care of yourselves and each other!
Bestest…
Eric
