Comments for Eric's Carcinoid Journey

Comment on Second Treatment - 3 weeks Post-treatment by Spirulina

Spirulina — Tue, 19 Aug 2008 21:43:15 +0000

Fajna stronka, bede tu wpadal czesciej, pozdro

Comment on Lutetium 177 - Second Treatment (The Lab Rat) by Journeyer

Journeyer — Wed, 28 May 2008 11:57:46 +0000

Leonie left a link to your blog on a post in my blog about my chromic myeloid leukaemia journey.

I’m so glad to read that your treatment has gone well. Clinical trials are such am important part of research. In addition to the obvious value of the therapy for you, you are helping so many other people by participating.

Enjoy your very busy schedule. Your travels sound very exciting.

Comment on Full Speed Ahead by Rich

Rich — Sun, 11 May 2008 15:53:52 +0000

Hi, sorry if this is the wrong place to post, but when I try to register on “Carcinoid Cancer Resources for Australians” it goes to a dead link. If feel that I should make Leonie aware of this, if she is not already
Regards
Rich (noid in rural SouthWest WA)

Comment on Full Speed Ahead by Jazz

Jazz — Wed, 30 Apr 2008 08:40:02 +0000

Hey Eric.

Glad to hear that all is well with you lot down there. Thanks for the web update! Great to see.

The achy brakey is a god send, million thanks Leonie!!!

Hoping that you enjoy your holiday thats fast approaching.

Lots of love

Jazz

Comment on All Over bar the Shouting by Rodolfo Rojas

Rodolfo Rojas — Fri, 11 Apr 2008 05:55:29 +0000

Thank you Eric so much for this wonderful blog that has brought great advice on how to treat Carcinoid. My name is Rodolfo Rojas and I’m a medical student in California. A friend of mine has his father suffering from carcinoid tumors and I volunteered to do a bit of search in order to find some alternative treatments, and I found this great blog. I have called Dr. Turner, however I have not been able to contact him as of now, but I am excited to ask him about my friend’s father possibility of being treated by him. I just wanted to pass a bit of information from my own research to you, have you heard of a product called FrequenSea? please take some time and watch the following video http://www.youtube.com/watch?v=mT7k2j28Gks&feature=related
and let me know what you think?
Blessings from California,
Rodolfo R.

Here is the link again:
http://www.youtube.com/watch?v=mT7k2j28Gks&feature=related

Comment on Second Treatment - 3 weeks Post-treatment by Carolyn Maher

Carolyn Maher — Sat, 24 Nov 2007 10:02:43 +0000

Hi Eric,
Have been following your story throughout the year. My father was diagnosed with carcinoid last year and is heading To Melbourne to Peter Mac on Monday for the 2nd of his Lutate treatments. Is having a low dose of chemo this time around.
Has been great to read your diary and hear how you are going to give us an insight into how the Lutate can help.
All the best, I will keep reading of your progress.
carolyn Maher

Comment on Second Treatment - 3 weeks Post-treatment by Rich

Rich — Wed, 21 Nov 2007 08:44:51 +0000

Thankyou for these postings about your experience with the trial, I really do appreciate them and find them encouraging.
I’ve just been diagnosed with Lung Carcinoid myself and am interested in finding out whether or not this trial would be suitable for me also. I’d be very very grateful if you’d send me some contact details about it
Kindest regards

Comment on Getting Ready for Treatment 2 by Bill Claxton

Bill Claxton — Sat, 27 Oct 2007 05:00:03 +0000

Great update. I will be interested if your second Lu-177 treatment, this time without chemo, is going to be better tolerated. Glad your symptoms are in remission. Amazing, really.

Comment on 4 Weeks Post-Treatment by leonie

leonie — Thu, 30 Aug 2007 13:50:10 +0000

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.

Comment on 4 Weeks Post-Treatment by Bill Claxton

Bill Claxton — Tue, 28 Aug 2007 01:09:14 +0000

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.