Hi everyone,
A couple of weeks ago I had my MRI scan that had been scheduled after the October meeting with my oconolgist. Last Thursday we met with him to review the results of the scan. It turned out the scan was specifically limited to the liver, so it is unclear what if anything might be happening elsewhere, but the liver results were reassuring. Three tumours measured slightly smaller, three slightly larger. Like the CGA and 5HIAA results the previous month, a mixed result, which my oconolgist interprets as pretty much nothing is really going on, status quo so to speak. He is agreeable to putting me on Lanreotide if I wanted.
Leonie and I discussed this later, and we both agreed, that even if the symptoms, which are mild at worst, are directly related to the Carcinoid; that the real benefits to lanreotide would be the prevention of any damage to the heart valves (a side effect of too much tumour generated seratonin in the blood stream. Even more importantly, results from other parts of the world have shown a fairly consistent if unintended side effect is the reduction in size, or in some cases the dissappearance, of carcinoid tumours.
Our plan is to approach our GP for the script, but if he has a problem qualifing for it, my oconolgist will help him out (it is a little unusual for a GP to prescribe anti-cancer drugs here). I am sure it will be helpful, not only that, but the monthly shot is in the arm not the bum!
I will continue with the semi-annual blood and urine marker tests to track any change in activity.
I continue to feel fine, and I am working as hard as ever. This week I hope to start my flight training for my pilots license (ultra-light aircraft). This should be really fun, a bit challenging, and something I always wanted to do. Consequently, Leonie’s birthday present to me was the flight training.
Take care out there all of you and take care of each other,
Eric
Hi Eric, Glad to hear you are doing so well.
It has been two years now since my husband was diagnosed and he too is doing very well and feeling terrific. Thus far his monthly LAR has been sufficient to stop any futher growth and stabalize his condition.
Kind regards
Hi Evelyn,
That is marvellous news indeed. Is he on Sandostatin or Lanreotide?
Best regards,
He is on Sandostatin. The doctors have considered swapping, but thought if you’re on a good thing stick to it.
Keep in touch, I always check to see how you are going as you are the reason we got on to the correct treatment plan and changed doctors.
Regards
Evelyn
Dear Eric,
I wanted to contact you on behalf of the Caring For Carcinoid Foundation. First, I was sorry to read about your diagnosis. It seems that you are very well informed however, and I think it’s great that you are able to share the specifics about your disease and treatment with the general public.
One of our primary goals at the Caring for Carcinoid Foundation (www.caringforcarcinoid.org) is raising awareness. We admire that individuals such as yourself are willing to share their difficult story and help spread the word about carcinoid and related neuroendocrine tumors; it goes a long way in increasing visibility of this terrible disease to the public. Your words also give support and strength to those affected by these diseases.
If you get the chance, we’d love for you to visit our website. One of our most popular online support services is the Survivor Stories section of our webpage (http://www.caringforcarcinoid.org/carcinoid/survivorstories.asp#Survivor_Stories). It is through the stories of those affected that members of the community can draw hope, support, and courage. We would love for you to add your own story.
In addition to Survivor Stories, we also have a free electronic newsletter providing up-to-date information affecting the carcinoid community. You can look through our past issues here: http://www.caringforcarcinoid.org/news/cfcfeupdates.asp
Please don’t hesitate to contact any of our patient support staff, including Robert Roose (Robert.roose@caringforcarcinoid.org ), Ben Blackwood (ben.blackwood@caringforcarcinoid.org) or myself at (Daniel.joo@caringforcarcinoid.org).
Finally, we are very excited to announce our new Facebook page (http://www.facebook.com/caringforcarcinoidfoundation) and Twitter page (http://twitter.com/curecarcinoid), we’d love for you to follow us on both.