Neuroendocrine stage 4 liver cancer....

Who has info on Stage 4 neuroendocrine liver cancer that has spread to the lymph node? my husbnad was recently diagnosed and the only treatmenat theyre giving him at the major houston cancer hospital is Sandostatin and periodic scans. The oncologist said the cancer is inoperable, would be risky. and she said there is no cure. He's only 46 years old. I dont understand why they dont try chemo or other treatmants to shrink the tumors. I cant imagine this cancer is  death sentence and the Dr's cant do anything about it.

I am from India, i am writing this reply from the hospital where my mother is given basic nursing support for injecting sandostatin. She was diagnosed with tumer, then another 3-4 weeks to decide the type(neuroendocrine). She had 3 months chemo which spoiled her health completelyl. Even during chemo periods her tumer was growing. Now her oncologist decided to inject sandostatin though she is too week(require physican support). Please don't consider chemo at this stage, chemo may reduce his survival from years/months to months/weeks.

Feel free to mail me

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knowmy mothers experience with neuroendocrine.

 

sorry this is happening

my sister had, had the whipple surgery in 2010, reacurrance in her original surgical site, veins and liver.

She did have 5 sessions of radiation which helped with the pain and she was only just a bit more tiered, she had to wait on swelling to go down before starting chemo.....they wouldnt give her it, she was still able to see to the kids, go shopping, her pain was under control, she was loosing alot of weight, but living

they had said that if she had started chemo she wouldnt have got back out of bed

BUT please if you can get a second and third opinion, we are in the UK were it isnt a option

she was only 43 xxxx

On Sep 21, 2012 7:22 PM deannacab wrote:

Who has info on Stage 4 neuroendocrine liver cancer that has spread to the lymph node? my husbnad was recently diagnosed and the only treatmenat theyre giving him at the major houston cancer hospital is Sandostatin and periodic scans. The oncologist said the cancer is inoperable, would be risky. and she said there is no cure. He's only 46 years old. I dont understand why they dont try chemo or other treatmants to shrink the tumors. I cant imagine this cancer is  death sentence and the Dr's cant do anything about it.

I am sorry to hear your husband has received this prognosis.

I have had pancreatic neuroendocrine cancer for 16 years with mets to liver diagnosed in 2005. I was fortunate and was a candidate for resection but I have friends from my support group who were not surgical candidates.

First, let me say that this type of cancer generally does not respond to chemo because the tumors are not chemically active enough to "eat" the chemo which kills them off.  I have heard of some people trying chemo though. Some patients are going to Germany to receive PRRT treatment which is not offered in the US because the FDA has not approved it even though it is has been used in Europe for some time.  There is a treatment available in the US called SirSphere or TheraSphere which implants microscopic beads directly into the liver.  You may want to do some research and/or ask the docs about the possibility of these treatments.  I am currently on Sandostatin LAR monthly injection to slow progression but am told that I will be candidate for Affinitor when I have progressive disease.  Good luck to you.

I have been diagnosed with a neuroendocrine in the pancreas,which has spread to the liver in June of 2011. Needless to say it has been a roller coaster ride. I have never been sick before. I have had a radiation embolization for the liver, because the cancer was in 2/3 of the liver. I was also given the Sandostatin shots every weeks, which I still get and they are wonderfull. The cancer kept growing slowly and 1 was put on SUTENT last April. For the last three weeks IQ was taken of the Sutent, because my platelets and white blood count was to low, but I should be back on the Sutent by next week. I have lost weight,gained most of it back. Never had any pain, just weak or tired, but in general feel great and do all my work and activities. I keep hoping and praying for a miracle and refuse to be sick. Hopefully a new drug will come out soon. I am encouraged by all your stories and I hope my story will help you. Regulat chemo does not help in this kind of tumors. Good luck, sincerely Marga.

On Sep 21, 2012 7:22 PM deannacab wrote:

Who has info on Stage 4 neuroendocrine liver cancer that has spread to the lymph node? my husbnad was recently diagnosed and the only treatmenat theyre giving him at the major houston cancer hospital is Sandostatin and periodic scans. The oncologist said the cancer is inoperable, would be risky. and she said there is no cure. He's only 46 years old. I dont understand why they dont try chemo or other treatmants to shrink the tumors. I cant imagine this cancer is  death sentence and the Dr's cant do anything about it.

Did you know that there are neuroendocrine oncology specialists?  Go to the Carcinoid Cancer Foundation website at

http://www.carcinoid.org/ to look at the list of recognized specialists for this type of cancer.  Most oncologists do not know enough about it to make appropriate recommendations. Neuroendocrine/carcinoid tumors are relatively rare and it takes oncologists who specialize in this to make appropriate recommendations.  This website will provide a wealth of great information for you.

Best to you and your husband.  

On Sep 21, 2012 7:22 PM deannacab wrote:

Who has info on Stage 4 neuroendocrine liver cancer that has spread to the lymph node? my husbnad was recently diagnosed and the only treatmenat theyre giving him at the major houston cancer hospital is Sandostatin and periodic scans. The oncologist said the cancer is inoperable, would be risky. and she said there is no cure. He's only 46 years old. I dont understand why they dont try chemo or other treatmants to shrink the tumors. I cant imagine this cancer is  death sentence and the Dr's cant do anything about it.

Hello, I have been stage 4 since February 2003.  Just started treatments a year ago with sandostatin and afinator, I am getting a cat scan in november and hoping for good results. I have been told this type of cancer does not respond to chemo.

On Sep 21, 2012 7:22 PM deannacab wrote:

Who has info on Stage 4 neuroendocrine liver cancer that has spread to the lymph node? my husbnad was recently diagnosed and the only treatmenat theyre giving him at the major houston cancer hospital is Sandostatin and periodic scans. The oncologist said the cancer is inoperable, would be risky. and she said there is no cure. He's only 46 years old. I dont understand why they dont try chemo or other treatmants to shrink the tumors. I cant imagine this cancer is  death sentence and the Dr's cant do anything about it.

Please consider a second opinion with one of the top three clinics in the US. We have come a long way in treating this disease. We have cxome a long way in treatment. I would assume the cancer in the liver is metastases. WHere is your primary?

Neuroendocrine Tumor CLinic

Kenner LA  (Near New Orleans)

1-504-464-8500 

 

My husband also has 4stage primary liver cancer. We found out in march 2012. We decided to go the alternative route. We are doing many different things with good sucess. Hospice just cancelled us and his tumor marker went from over 6000 to normal. Check out chrisneatcancer.com under survivor stories is our. Hope that helps, your husband has still many choices and hopefully more time.

On Oct 18, 2012 4:26 AM manzanita wrote:

My husband also has 4stage primary liver cancer. We found out in march 2012. We decided to go the alternative route. We are doing many different things with good sucess. Hospice just cancelled us and his tumor marker went from over 6000 to normal. Check out chrisneatcancer.com "" target="_blank" rel="nofollow">http://chrisneatcancer.com " target="_blank" rel="nofollow">chrisneatcancer.com under survivor stories is our. Hope that helps, your husband has still many choices and hopefully more time.

sorry I just see a typo, it is chrisbeatcancer.com