Slow Growing Cancer ???????

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Slow Growing Cancer ???????

by gunnys_girl on Fri Jul 18, 2008 12:00 AM

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Here is our story... My husband an otherwise healthy 37 yr old male, was diagnosed with carcinoid last year in September. Primary was small intestine w/mets to the liver and spleen.  He underwent a chemoembolization on the right lobe in September 07' for a tumor causing him great pain, they said about the size of a tangerine. After his treatment he continued to be monitored every three months. Well 2 weeks ago it was time for another 3 month check up, he did his 24-hr urine test and his 5HIAA number came back at a 45!!! Mind you he was at a 29 when diagnosed in September 7 and in March 08 at his 3 month he was down to a 5. How does this number become 5 times higher in 3 months?? the doc ordered additional lab work and a cat scan - so we met with him last week for results and he confirmed new lesions on both lobes and existing spots to have growth. My husband is scheduled for an embolization July 30 on the left lobe and then another on the right 3 months from that.  I dont understand how this slow growing cancer can escalate and cause so much damage in just 3 months. Anyone else experience this??? Can you explain it to me in English, I am so worried about him - I am worried about all of us. how long will this treatment last??? who knows, the waiting is the hardest part....hurry up and wait...thats all we can do.  Any feedback greatly appreciated I noticed there isnt much written about carcinoid but what I have read has been informative. But this newest development has really thrown me into a tailspin help!!!! 

RE: Slow Growing Cancer ???????

by Siegrun on Fri Jul 18, 2008 12:00 AM

Quote | Reply

 

On 7/18/2008 gunnys girl wrote:

Here is our story... My husband an otherwise healthy 37 yr old male, was diagnosed with carcinoid last year in September. Primary was small intestine w/mets to the liver and spleen.  He underwent a chemoembolization on the right lobe in September 07' for a tumor causing him great pain, they said about the size of a tangerine. After his treatment he continued to be monitored every three months. Well 2 weeks ago it was time for another 3 month check up, he did his 24-hr urine test and his 5HIAA number came back at a 45!!! Mind you he was at a 29 when diagnosed in September 7 and in March 08 at his 3 month he was down to a 5. How does this number become 5 times higher in 3 months?? the doc ordered additional lab work and a cat scan - so we met with him last week for results and he confirmed new lesions on both lobes and existing spots to have growth. My husband is scheduled for an embolization July 30 on the left lobe and then another on the right 3 months from that.  I dont understand how this slow growing cancer can escalate and cause so much damage in just 3 months. Anyone else experience this??? Can you explain it to me in English, I am so worried about him - I am worried about all of us. how long will this treatment last??? who knows, the waiting is the hardest part....hurry up and wait...thats all we can do.  Any feedback greatly appreciated I noticed there isnt much written about carcinoid but what I have read has been informative. But this newest development has really thrown me into a tailspin help!!!! 

 

I was diagnosed 5 years ago ( August 13, when the lights went out in New York City)  with carcinoid syndrome with many metastases in the liver.  I was on a trial treatment with Sutent which worked for a while,  and then I had 12 chemotherapy sessions with Avastin and Oxilaplatin. Right now I have once a month a shot of Sandostatin.   My cancer is considered stable and I have every four month a Ct Scan and so far I am doing well.  I have a high level of energy and have been doing everything I did before the diagnosis i.e hiking. It is my goal to hike every year 3 mountains that are over 10 000 feet and I have managed that during the last 5 years. So do not despair. My doctor told me that I would probably die from something other than carcinoid syndrome. By the way many years ago it was not even considered a cancer.  Consider carcinoid syndrome as a chronic disease. Your husband probably had it for many years before he was diagnosed. I kow I had it and before a female doctor finally gave me the correct diagnosis I was considered pregnant by 2 doctors, wearing high heels by another and having too much stress in my life by a third doctor.  So  believe me this is a manageable disease and after your husband is on some sort of regimen,  things will look brighter

Siegrun 

RE: Slow Growing Cancer ???????

by gunnys_girl on Sat Jul 19, 2008 12:00 AM

Quote | Reply

 

On 7/18/2008 Siegrun wrote:

 

On 7/18/2008 gunnys girl wrote:

Here is our story... My husband an otherwise healthy 37 yr old male, was diagnosed with carcinoid last year in September. Primary was small intestine w/mets to the liver and spleen.  He underwent a chemoembolization on the right lobe in September 07' for a tumor causing him great pain, they said about the size of a tangerine. After his treatment he continued to be monitored every three months. Well 2 weeks ago it was time for another 3 month check up, he did his 24-hr urine test and his 5HIAA number came back at a 45!!! Mind you he was at a 29 when diagnosed in September 7 and in March 08 at his 3 month he was down to a 5. How does this number become 5 times higher in 3 months?? the doc ordered additional lab work and a cat scan - so we met with him last week for results and he confirmed new lesions on both lobes and existing spots to have growth. My husband is scheduled for an embolization July 30 on the left lobe and then another on the right 3 months from that.  I dont understand how this slow growing cancer can escalate and cause so much damage in just 3 months. Anyone else experience this??? Can you explain it to me in English, I am so worried about him - I am worried about all of us. how long will this treatment last??? who knows, the waiting is the hardest part....hurry up and wait...thats all we can do.  Any feedback greatly appreciated I noticed there isnt much written about carcinoid but what I have read has been informative. But this newest development has really thrown me into a tailspin help!!!! 

 

I was diagnosed 5 years ago ( August 13, when the lights went out in New York City)  with carcinoid syndrome with many metastases in the liver.  I was on a trial treatment with Sutent which worked for a while,  and then I had 12 chemotherapy sessions with Avastin and Oxilaplatin. Right now I have once a month a shot of Sandostatin.   My cancer is considered stable and I have every four month a Ct Scan and so far I am doing well.  I have a high level of energy and have been doing everything I did before the diagnosis i.e hiking. It is my goal to hike every year 3 mountains that are over 10 000 feet and I have managed that during the last 5 years. So do not despair. My doctor told me that I would probably die from something other than carcinoid syndrome. By the way many years ago it was not even considered a cancer.  Consider carcinoid syndrome as a chronic disease. Your husband probably had it for many years before he was diagnosed. I kow I had it and before a female doctor finally gave me the correct diagnosis I was considered pregnant by 2 doctors, wearing high heels by another and having too much stress in my life by a third doctor.  So  believe me this is a manageable disease and after your husband is on some sort of regimen,  things will look brighter

Siegrun 

Thank you for your response, this is all so new to us and frightening. I have been doing some research but I know you cant always believe what you read. I applaude you on your positive attitude, we are doing the same but it just seems to really get  us down sometimes. Good luck on the hiking it sounds adventurous!!!!

RE: Slow Growing Cancer ???????

by Siegrun on Mon Jul 21, 2008 12:00 AM

Quote | Reply

 

On 7/19/2008 gunnys girl wrote:

 

On 7/18/2008 Siegrun wrote:

 

On 7/18/2008 gunnys girl wrote:

Here is our story... My husband an otherwise healthy 37 yr old male, was diagnosed with carcinoid last year in September. Primary was small intestine w/mets to the liver and spleen.  He underwent a chemoembolization on the right lobe in September 07' for a tumor causing him great pain, they said about the size of a tangerine. After his treatment he continued to be monitored every three months. Well 2 weeks ago it was time for another 3 month check up, he did his 24-hr urine test and his 5HIAA number came back at a 45!!! Mind you he was at a 29 when diagnosed in September 7 and in March 08 at his 3 month he was down to a 5. How does this number become 5 times higher in 3 months?? the doc ordered additional lab work and a cat scan - so we met with him last week for results and he confirmed new lesions on both lobes and existing spots to have growth. My husband is scheduled for an embolization July 30 on the left lobe and then another on the right 3 months from that.  I dont understand how this slow growing cancer can escalate and cause so much damage in just 3 months. Anyone else experience this??? Can you explain it to me in English, I am so worried about him - I am worried about all of us. how long will this treatment last??? who knows, the waiting is the hardest part....hurry up and wait...thats all we can do.  Any feedback greatly appreciated I noticed there isnt much written about carcinoid but what I have read has been informative. But this newest development has really thrown me into a tailspin help!!!! 

 

I was diagnosed 5 years ago ( August 13, when the lights went out in New York City)  with carcinoid syndrome with many metastases in the liver.  I was on a trial treatment with Sutent which worked for a while,  and then I had 12 chemotherapy sessions with Avastin and Oxilaplatin. Right now I have once a month a shot of Sandostatin.   My cancer is considered stable and I have every four month a Ct Scan and so far I am doing well.  I have a high level of energy and have been doing everything I did before the diagnosis i.e hiking. It is my goal to hike every year 3 mountains that are over 10 000 feet and I have managed that during the last 5 years. So do not despair. My doctor told me that I would probably die from something other than carcinoid syndrome. By the way many years ago it was not even considered a cancer.  Consider carcinoid syndrome as a chronic disease. Your husband probably had it for many years before he was diagnosed. I kow I had it and before a female doctor finally gave me the correct diagnosis I was considered pregnant by 2 doctors, wearing high heels by another and having too much stress in my life by a third doctor.  So  believe me this is a manageable disease and after your husband is on some sort of regimen,  things will look brighter

Siegrun 

Thank you for your response, this is all so new to us and frightening. I have been doing some research but I know you cant always believe what you read. I applaude you on your positive attitude, we are doing the same but it just seems to really get  us down sometimes. Good luck on the hiking it sounds adventurous!!!!

 

When you are first diagnosed with cancer,  you feel that you have fallen into a deep deep hole and it is impossible to climb out of this hole.  As time goes on, you discover that there are some stones sticking out at the side of this hole.  You lift yourself up and  you move to a higher plateau.  Then you discover more extensions.  Again you lift yourself up.  This is how living with cancer is.  Sometimes you think you get to the next plateau but you did not make it. Then you look around and you will find another extension.   Keep climbing and you will get out of the hole.  I wish that every extension that you try will lead to a plateau.  Remember our kind of cancer is a chronic disease which is MANAGEABLE! 

RE: Slow Growing Cancer ???????

by Gary1 on Fri Sep 12, 2008 12:00 AM

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Hi my husband a healthy 46 yr. old & I are experiencing the same Carcinoid question. SLOW GROWING...not! After 4 surgeries, and 4 years of trying to de-bulk the tumors we are now going down a different path. We have an appointment set-up with Dr. Woltering. I am hoping that he can direct us to a treatment that may help to stabilize this. In May all of the scans were showing that a 1.5 - 2" tumor had come back in the original site (appendix). If anyone every finds one in the appendix it is best to go back and have a right hemicolectomy to remove everything. We were never given that guidance so the tumors keep bouncing from that area to the liver then back. Now just after having that surgery and no signs in May of anything in the liver we are showing a new tumor in the liver that is about 1/2". Plus we went from 1 to 4 spots on the lungs. I am hoping that Gary will be a good candidate for the treatment in Houston. After looking at everything that looks the most promising if the cancer is in multiple locations. I am having the pathology from the operations retested with Dr. Woltering because I think that there are different variations to these tumors. I think Gary has atypical carcinoid that is a little bit more aggressive.


Please know that you are not alone. The last scan results hit me very hard. If you can find a carcinoid support group that would really help. We went to a meeting/conference in Harrisburg last April and it was very informational and inspirational. In 4 hours I received more information than over the last 4 years. The thing that struck me the most is how non-selective this cancer is. Some many people of different sexes and ages with carcinoid cancer.

Let me know how the emobolization is going. Were are you having this treatment? We have not tried anything but Sandostatin, which has helped with the flushing & diarrhea but not with inhibiting the growth of new tumors. I am hoping we find help with Dr. Woltering, we are traveling from Maryland to New Orleans for the appointment.

Brenda

RE: Slow Growing Cancer ???????

by KyleB on Tue Oct 14, 2008 12:00 AM

Quote | Reply

Look into this

http://www.gerson.org/g_therapy/case_studies.asp

 

Solutions staring you in the face! 

RE: Slow Growing Cancer ???????

by Siegrun on Fri Mar 20, 2009 12:00 AM

Quote | Reply

 

On 7/19/2008 gunnys girl wrote:

 

On 7/18/2008 Siegrun wrote:

 

On 7/18/2008 gunnys girl wrote:

Here is our story... My husband an otherwise healthy 37 yr old male, was diagnosed with carcinoid last year in September. Primary was small intestine w/mets to the liver and spleen.  He underwent a chemoembolization on the right lobe in September 07' for a tumor causing him great pain, they said about the size of a tangerine. After his treatment he continued to be monitored every three months. Well 2 weeks ago it was time for another 3 month check up, he did his 24-hr urine test and his 5HIAA number came back at a 45!!! Mind you he was at a 29 when diagnosed in September 7 and in March 08 at his 3 month he was down to a 5. How does this number become 5 times higher in 3 months?? the doc ordered additional lab work and a cat scan - so we met with him last week for results and he confirmed new lesions on both lobes and existing spots to have growth. My husband is scheduled for an embolization July 30 on the left lobe and then another on the right 3 months from that.  I dont understand how this slow growing cancer can escalate and cause so much damage in just 3 months. Anyone else experience this??? Can you explain it to me in English, I am so worried about him - I am worried about all of us. how long will this treatment last??? who knows, the waiting is the hardest part....hurry up and wait...thats all we can do.  Any feedback greatly appreciated I noticed there isnt much written about carcinoid but what I have read has been informative. But this newest development has really thrown me into a tailspin help!!!! 

 

I was diagnosed 5 years ago ( August 13, when the lights went out in New York City)  with carcinoid syndrome with many metastases in the liver.  I was on a trial treatment with Sutent which worked for a while,  and then I had 12 chemotherapy sessions with Avastin and Oxilaplatin. Right now I have once a month a shot of Sandostatin.   My cancer is considered stable and I have every four month a Ct Scan and so far I am doing well.  I have a high level of energy and have been doing everything I did before the diagnosis i.e hiking. It is my goal to hike every year 3 mountains that are over 10 000 feet and I have managed that during the last 5 years. So do not despair. My doctor told me that I would probably die from something other than carcinoid syndrome. By the way many years ago it was not even considered a cancer.  Consider carcinoid syndrome as a chronic disease. Your husband probably had it for many years before he was diagnosed. I kow I had it and before a female doctor finally gave me the correct diagnosis I was considered pregnant by 2 doctors, wearing high heels by another and having too much stress in my life by a third doctor.  So  believe me this is a manageable disease and after your husband is on some sort of regimen,  things will look brighter

Siegrun 

Thank you for your response, this is all so new to us and frightening. I have been doing some research but I know you cant always believe what you read. I applaude you on your positive attitude, we are doing the same but it just seems to really get  us down sometimes. Good luck on the hiking it sounds adventurous!!!!

 

RE: Slow Growing Cancer ???????

by jengib on Sat Oct 31, 2009 09:41 PM

Quote | Reply

My dad also has aggressive growing carcinoids with new mets and growth within 8 weeks of CT scans - chemo didn't work trying nuc med scans at present to see if any other treatment will slow it. You are not alone. We were devastated by the results of the scan. Cancer is bad but I had hoped it would grow very slowly.

 

Jen - N Ireland  

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