Eric had his 3rd set of scans today - arms held over his head whilst lying down has not proved to be the most comfortable position, especially when he has to stay still for 30 to 40 minutes at a time! Bloods were also taken.. Eric arms are definitely looking a little worse for wear with all the blood that has been drawn over the past few days.
The nausea seems to be settling and Eric is a lot better today than yesterday.
Dr Turner also took time out to show us the scans so far and we got to see how the Lu-177 laced octreotide is being distributed amongst the tumours. It was obvious even from first glance at the scans that Eric’s tumours are taking up the Octreotide very readily. The scans show that there are 2 larger tumours in the liver with several (6 - 8 it looks like) smaller tumours peppered through out the liver.
There is also a tumour either in the intestine or in the pancreas …which from previous scans we strongly suspect it is the pancreas.
There also appears to be two tumours which lit up in the chest area. As we don’t yet have a CT scan of the chest we are not sure whether they are in the lung or bone. We will know for sure next round of treatment as Eric will have a chest as well as an abdominal CT scan. This means even longer in the CT tunnel with his arms over his head! These are new tumours which we have not seen before and shows a coninuing spread of the disease, which is a little disheartening. We are now doubly glad that Eric is having the Lu-177 Clement treatment as this means that all Octreotate recpetive tumours are being treated not just the ones in the liver!
Eric gets to rest for the weekend and then it is another set of scans Monday along with the blood tests and then finally home to Busselton.
I am very inspired by your story Eric. Isn’t it wonderful that your family is able to help you blog this story! I read about this blog on the ACOR list today, and I’d like very much to subscribe to updates using RSS (please share the URL for that).
There is a lot of humor in your blog posts, at least for those in the know. Carrying around a discreet 5HIAA in a shoulder bag, really makes me laugh! I also like the explanation of “lots of lead shielding and bottles” and long periods in “the CT tunnel”.
I am also a carcinoid patient originally from California (I think my wife has written to Leonie before). I am living in Singapore and have visited Freemantle to meet Dr. Turner. Compared to Singapore’s hospitals I found the setting a bit ‘rustic’, but he is a wonderful doctor, and has a very professional staff (as you have pointed out). For better or worse, although I have metastatic disease and syndrome, no liver mets can be seen on scans. This means I cannot participate in the CLEMENT trial, although Dr. Turner invited me.
For patients that have positive Octreoscans, Lu-177 PRRT is effective in targeting tumors throughout the body. Dr. Krenning has written that this treatment is most effective for small lesions, and recommends early intervention. I would really like to get my PRRT treatment asap, but have started on Sandostatin LAR in the meantime. Wonder if the trial means you’re also taking chemo to sensitise the tumors?
Anyway, I wish you speedy remission, and will definitely visit Moon Haven in Margaret River when I visit Freemantle again.
Hi Bill,
Good to hear from you. I agree that Fremantle Hospital is a bit of a shock when compared to the more modern hospitals but the “rabbit warren” as we have taken to calling it houses some very advanced equipment and some of the best minds when it comes to dealing with Neuroendocrine Tumours in Australia.
It is our understanding Dr Turner and his staff are at the cutting edge of dosimetry studies when dealing with the PRRT treatments.
Yes the study Eric is on is looking at the effectiveness of the Lu-177 PRRT in combination with taking a reduced strength chemotherapy agent Capecitabine This chemotherapy agent ususally used for the treatment of breast cancer is thought to help accentuate the effectiveness of the Lu-177 Octreotate treatment.
I hope you are able to find a suitable treatment soon. At least the Sandostatin LAR should help ease some of your symptoms. Eric certainly felt well and was able to return to his normal everyday activities whilst taking it.
Do keep in touch… the blog will be updated regularly and you will also find the link to the RSS feeds at the bottom of the web page.
Take care
Leonie and Eric
Joe…
Check out my domain sometime….