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Islet Cell Carcinoma..

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Doctor / Nurse
Marcie77
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Subject: Islet Cell Carcinoma..
Date: 02/19/2008

Hello All..

Just an update..almost 1 year since my two treatments in Basel..ALL MRI's, LABS etc remain normal..NO indications of tumor regrowth, liver is still clear..going for repeat Octreascan at end of March..Hope everyone is doing great!! 

Marcie

Subject: RE: Islet Cell Carcinoma..
Date: 02/25/2008

 

On 2/19/2008 Marcie77 wrote:

Hello All..

Just an update..almost 1 year since my two treatments in Basel..ALL MRI's, LABS etc remain normal..NO indications of tumor regrowth, liver is still clear..going for repeat Octreascan at end of March..Hope everyone is doing great!! 

Marcie


Hi Marcie,  'Sounds like you & I may have similar issues.  I'm a 3 1/2 year islet cell cancer survivor, I'm a 51 y/o female, and after the initial tumor removal, I ended up with liver mets within 18 months.  What kind of treatments did you have in Basel (where is Basel?)?  I've been treated for the liver mets, but am looking for something to prevent the liver mets from re-occuring, which is what islet cell carcinoma keeps on doing once it has metastasized...as I understand it.  I'd appreciate your thoughts on this. -therose 

Subject: RE: Islet Cell Carcinoma..
Date: 03/03/2008
Hi I have been dx with islets cell ca and liver mets.  That was 13 years ago in November. It has been a long time since my dx and I am doing well. I still work full time and have been treated with Sandostatin for the past 7 years. I am on a insulin pump which administers the sandostatin on a constant basis.  I am being treated in Boston, MA and have been with the same Dr. for the whole time.  I have been on pain meds since the beginning and have had some ups and downs but I have to say that it has mostly been up.  I have been treated with gamma interferon in the beginning and have moved onto the Sandostatin. I have also been thru 3 courses of different chemo and many CT Scans.  The original tumor is in the tail of the pancreas the size of a dime and the liver mets are too many to count. That is what has caused me most of my pain, the liver mets.  It has been a very long 13 years but very happy. I have seen both my daughters get married and I have two grandsons, one is 13 and the other 10 weeks old.  My family is closer to each other as well as too me since it was discovered.  It has been more of a window than a door, it has opened a world to me and to my family and my friends.  I was once told that I had only two months to live, that turned out to be wrong. That was by a Dr. who didn't know me, the Dr. that I have been with since that mistake is someone who believes that there will always be something to try. My life has been enhanced by my doctor and my nurse pract. who have always look tedo find the positive and always the truth in the situation.  I hope this infomation was helpful, by the way I plan on being here for at least 20 or 30 more years.
Doctor / Nurse
Doctor / Nurse
Marcie77
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Subject: RE: Islet Cell Carcinoma..
Date: 03/24/2008

Hi to everyone that has written..I'm glad so many of you are doing well..I'm thrilled that the treatment in Basel is helping so many people.  I was hoping the article with Patrick Swazye would bring some more attention to this disease.  I've tried finding a website for Patrick that might tell what kind of pancreatic cancer he has and where we could post a comment..No such luck.  I personally just finished my third Octreascan, waiting on the results.. I wish someone like Oprah, Ellen, People magazine would do a article focusing on the different kinds of pancreatic cancer and various treatments available!!  Perhaps Basel's treatment will be here soon..

Sincerely,

Marcie R, RN, BSN, MSM..

7 year survivor, NonFunctioning Islet Cell Carcinoma

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