Comments for Eric's Carcinoid Journey http://moonhaven.com.au/ericsstory From diagnosis and treatment to living with carcinoid cancer Fri, 12 Mar 2010 07:22:15 +0000 http://wordpress.org/?v=2.7.1 hourly 1 Comment on Post Infusion Day 3 by My Domain http://moonhaven.com.au/ericsstory/2007/07/20/post-infusion-day-3/comment-page-1/#comment-87 My Domain Fri, 05 Feb 2010 01:22:10 +0000 http://moonhaven.com.au/ericsstory/?p=6#comment-87 <strong>Joe...</strong> Check out my domain sometime.... Joe…

Check out my domain sometime….

]]> Comment on The Journey Continues by Des Bailey http://moonhaven.com.au/ericsstory/2009/05/23/the-journey-continues/comment-page-1/#comment-86 Des Bailey Wed, 06 Jan 2010 14:33:10 +0000 http://moonhaven.com.au/ericsstory/?p=49#comment-86 Hi Eric, I was a trial patient with you at Fremantle Hospital for the Clement-2 Study and treatment with Lu-177 and Capecitabine. Previous to the Trial I had major surgery for removal of carcinoid tumours from the lung and liver. After surgery I still had an inoperable tumour in the liver plus numerous body tumours as well as in the bones. Last November 2009, I had an Octreotide scan (eighteen months after my final treatment). I was amazed and Doctor Turner was excited and pleased as all traces of Carcinoid Tumour had disappeared. I cannot speak highly enough about the treatment provided to me by Doctor Turner and staff at Nuclear Medicine, Fremantle Hospital. Also I would like to thank you Eric, your blog has been a great help and comfort to me, especially in the early days. If my experiences could assist any one then I would be pleased to help. Thank you again Eric, wishing you all the very best. Des Bailey Hi Eric,
I was a trial patient with you at Fremantle Hospital for the Clement-2 Study and treatment with Lu-177 and Capecitabine. Previous to the Trial I had major surgery for removal of carcinoid tumours from the lung and liver. After surgery I still had an inoperable tumour in the liver plus numerous body tumours as well as in the bones.
Last November 2009, I had an Octreotide scan (eighteen months after my final treatment). I was amazed and Doctor Turner was excited and pleased as all traces of Carcinoid Tumour had disappeared. I cannot speak highly enough about the treatment provided to me by Doctor Turner and staff at Nuclear Medicine, Fremantle Hospital.
Also I would like to thank you Eric, your blog has been a great help and comfort to me, especially in the early days. If my experiences could assist any one then I would be pleased to help. Thank you again Eric, wishing you all the very best.
Des Bailey

]]> Comment on Most Recent Followup by Daniel http://moonhaven.com.au/ericsstory/2009/11/24/most-recent-followup/comment-page-1/#comment-85 Daniel Mon, 14 Dec 2009 19:42:23 +0000 http://moonhaven.com.au/ericsstory/?p=59#comment-85 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. 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.

]]> Comment on Most Recent Followup by evelyn http://moonhaven.com.au/ericsstory/2009/11/24/most-recent-followup/comment-page-1/#comment-84 evelyn Mon, 30 Nov 2009 08:19:24 +0000 http://moonhaven.com.au/ericsstory/?p=59#comment-84 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 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

]]> Comment on Most Recent Followup by Eric http://moonhaven.com.au/ericsstory/2009/11/24/most-recent-followup/comment-page-1/#comment-83 Eric Sun, 29 Nov 2009 22:35:34 +0000 http://moonhaven.com.au/ericsstory/?p=59#comment-83 Hi Evelyn, That is marvellous news indeed. Is he on Sandostatin or Lanreotide? Best regards, Hi Evelyn,

That is marvellous news indeed. Is he on Sandostatin or Lanreotide?

Best regards,

]]> Comment on Most Recent Followup by evelyn http://moonhaven.com.au/ericsstory/2009/11/24/most-recent-followup/comment-page-1/#comment-82 evelyn Sun, 29 Nov 2009 09:09:25 +0000 http://moonhaven.com.au/ericsstory/?p=59#comment-82 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 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

]]> Comment on Lutetium 177 - Second Treatment (The Lab Rat) by Paul Paterson http://moonhaven.com.au/ericsstory/2007/11/06/lutetium-177-second-treatment-the-lab-rat/comment-page-1/#comment-78 Paul Paterson Sun, 21 Jun 2009 00:20:39 +0000 http://moonhaven.com.au/ericsstory/?p=14#comment-78 Dear Eric i am glad to hear of the success you have had with carcinoid. I have just been diagnoised with carcinoid syndrome. With an octreocide scan they have a positive result with a 4x5 cm area of intense uptake projected over the left lower thorax close to the diapham. A cardiac MRI was conducted to confirm te primary tumor is in fact in my heart. There is also abnormal increased uptake with in several other sites within the thorax. Anterior mediastinum at the T9/T10 level, the right at the T4 within the mediastinum,in the region of the left lobe of liver and 2 sites in the right lobe of the liver. Wow what a mouth full but i hope to get into some sort of clinical trials if a solution to my mess is not at hand. This Dr Turners name came to me via an oncology forum from an American site. My on oncologist has refered me to the Peter Mac Institute in Melbourne and has not even mentioned this Dr of yours. Any information that you could provide would be much appreciated. Dear Eric i am glad to hear of the success you have had with carcinoid. I have just been diagnoised with carcinoid syndrome. With an octreocide scan they have a positive result with a 4×5 cm area of intense uptake projected over the left lower thorax close to the diapham. A cardiac MRI was conducted to confirm te primary tumor is in fact in my heart. There is also abnormal increased uptake with in several other sites within the thorax. Anterior mediastinum at the T9/T10 level, the right at the T4 within the mediastinum,in the region of the left lobe of liver and 2 sites in the right lobe of the liver. Wow what a mouth full but i hope to get into some sort of clinical trials if a solution to my mess is not at hand. This Dr Turners name came to me via an oncology forum from an American site. My on oncologist has refered me to the Peter Mac Institute in Melbourne and has not even mentioned this Dr of yours. Any information that you could provide would be much appreciated.

]]> Comment on The Journey Continues by daisy hill http://moonhaven.com.au/ericsstory/2009/05/23/the-journey-continues/comment-page-1/#comment-76 daisy hill Thu, 11 Jun 2009 16:36:24 +0000 http://moonhaven.com.au/ericsstory/?p=49#comment-76 I live in the US and we are unable to get the LU-177 at this time. My doctor is working on it, and I have had 2 treatments with Indium 111 which can only be given by my one doctor here in the US. Are you familiar with the 111? I have been trying to find someone with my neuroendocrine cancer to e-mail and get more info before my 3rd treatment cones up, which will be in about 3 more months. If you can help me please e-mail at drhzm@yahoo.com I live in the US and we are unable to get the LU-177 at this time. My doctor is working on it, and I have had 2 treatments with Indium 111 which can only be given by my one doctor here in the US. Are you familiar with the 111? I have been trying to find someone with my neuroendocrine cancer to e-mail and get more info before my 3rd treatment cones up, which will be in about 3 more months. If you can help me please e-mail at drhzm@yahoo.com

]]> Comment on Lutetium 177 - Second Treatment (The Lab Rat) by Sharon Maynard http://moonhaven.com.au/ericsstory/2007/11/06/lutetium-177-second-treatment-the-lab-rat/comment-page-1/#comment-74 Sharon Maynard Sun, 31 May 2009 03:14:58 +0000 http://moonhaven.com.au/ericsstory/?p=14#comment-74 Eric, my son has carcinoid with metasis to liver, bone, lung, lymph nodes and I need to get him to where he can get the LU 177. It has not been approved in USA and his liver could fail according to the liver specialist within the year. I need information about how I can get him to a Dr. that could give him the LU 177. We have researched the Fremantle Hospital and Dr. Turner, however, we need specific information as to how we can go about getting this treatment for him. We would need appointments - maybe referrals and if you could help us with any information we would be eternally grateful. Eric, my son has carcinoid with metasis to liver, bone, lung, lymph nodes and I need to get him to where he can get the LU 177. It has not been approved in USA and his liver could fail according to the liver specialist within the year. I need information about how I can get him to a Dr. that could give him the LU 177. We have researched the Fremantle Hospital and Dr. Turner, however, we need specific information as to how we can go about getting this treatment for him.
We would need appointments - maybe referrals and if you could help us with any information we would be eternally grateful.

]]> Comment on All Over bar the Shouting by Buy acai berry http://moonhaven.com.au/ericsstory/2008/04/04/all-over-bar-the-shouting/comment-page-1/#comment-73 Buy acai berry Fri, 22 May 2009 18:51:50 +0000 http://moonhaven.com.au/ericsstory/?p=28#comment-73 Your blog is very interresting for me, i will come back here.. Your blog is very interresting for me, i will come back here..

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