Things seem very much back to normal for me, whatever normal is. Once I finished the Capecitabine script all the little “problems” and issues seemed to quickly abate. I haven’t noticed any side effects whatsoever this past week. I have been working at 110% and although tired at the end of the day, that is just work related.Â
What I have noticed is a decided abatement of the carcinoid symptoms, which indicates to me that the treatment is having a very positive effect on the carcinoids themselves. We will have to wait until the next treatment session in October to see what has actually been happening.
Yesterday we were in Perth to visit Dr. Philip Claringbold, my oncologist. He was very concerned about the “angina” like attacks that had occured, and said that most likely it is a rare side effect of the the Capecitabine. He feels it is too risky to continue the use of the Capecitabine for the clinical study. It seems like 1 in a 1,000 have this type of reaction and there is a real possibility of causing severe heart damage if continued. This brought into question my continued participation in the study group since it is designed to study the combined effects of the Lutetium-177 and the Capecitabine. However, a brief consulation with Dr. Harvey Turner resolved the matter favourably.  Dr. Turner said that I could stay on the study just using the Lutetium-177 treatment. That was good news because I felt the treatment is being very effective for me.
Dr. Claringbold also wants me to continue the LAR injections of Sandostatin even though I have no symptoms just as a precaution. So its back to my GP’s surgery this week for a double shot in the bum!!
 Stay well - be well
 Eric
It would be interesting to know if other patients in the trial have dropped the chemo bit. Also intrigued that your oncologist is keeping you on LAR. I’d have thought that the trial rules would preclude that, so as not to interfere with takeup of the Lu-177 tagged Octreotide.
Very glad to hear that you’re physically active and feeling better too. Thanks for sharing this update.
Hi Bill,
Good points you have raised and ones we have also talked over with the oncologist.
The exclusion period for the Sandostatin LAR is 6 weeks. Seeing that there is something like 15 weeks between the first treatment and the second Eric has time to be covered by and receive the benefits of the sandostatin.
This is important for every month without Sandostatin is a month where the excessive hormones (especially the serotonin) can and does affect the heart and other organs.
As for the Capcetabine side effects… this is a 1 in 1000 event… and as far as we know Eric is the first! It is important that this is recorded in the literature so that if it does occur again the doctors are aware of it etc.
ERic will keep on updating as and ehen there is something to say. For the moment everything is fine and we are just looking forward to the imaging and next round late October.