Anyone out there with Neuroendocrine Cancer?

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Anyone out there with Neuroendocrine Cancer?

by Jodi1 on Tue May 29, 2007 12:00 AM

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Hi there,

My husband was diagnosed in October of 2005 with stage 4 neuroendocrine cancer (unknown primary) with mets to liver and some to bone. I came across this website a few weeks ago and have been reading all of the posts daily and have never found anyone with this type of diagnosis. My husband was inititally treated with Cisplatin and Irinotecan, then it was determined his cancer was a slow growing type (carcinoid) so he was switched to Thalidomide for a few months, then onto a combination of Thalidomide and Temodar for a few more months. Next he went into a clinical trial of Avastin and Panzem for about 10 months, but recently went off the trial as he was starting to experience a great deal of pain in the area of his liver and there was some growth to his tumors. He is now on a combination of Avastin and Xeloda (4 weeks into it now) and will go through a total of 9 weeks of treatment before his next CT scan.

Has anyone been treated for this type of cancer with any success? What other options are out there? I am looking into another type of treatment for him - there is currently a Phase 1 Clinical Trial using the Seneca Valley Virus, a naturally occurring animal virus which has been shown to attack tumors with neuroendocrine features when injected into humans. It sounds like a scary science experiment, but if it can help my husband I am all for it. Of course I am left to do all the research about this on my own, as my husband's oncologist basically dismissed this option as "just another one of those vaccines that probably doesn't work".

I would appreciate any feedback anyone could give me. I am extremely frustrated that this particular type of cancer has no specific treatment. I am growing tired of the "Let's try this drug - it works for (colon, brain, lung, etc) cancer patients." Meanwhile my husband is slowly deteriorating while we helplessly watch him fade away. He is only 42 years old, and we have 3 children, ages 12, 10, and 3.

Thanks for listening. My prayers go out to ALL of you who are fighting this horrible fight.

Jodi

 

 

 

 

RE: Anyone out there with Neuroendocrine Cancer?

by Carriesue on Tue Sep 25, 2007 12:00 AM

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Hi my name is Carrie, I live in Western Ma.  I am sorry that I cannot offer you the answers you are looking for.  Since this was written back in May I hope that you have come across some more answers and your husband is doing better.  I am 32 and was diagnosed at age 29 with Neuroendocrine (carcinoid) in pancreas, dneumde (small intestines) and mets to my liver.  I have been on similar stuff as your husband and stuff worked for about 1 1/2.  Well if you want to talk please email me I might just offer a shoulder to support you with.  I wish i had the answers.  Boy do I ever wish!!  Please visit my website  www.caringbridge.org/visit/carriesnelgrove  or email me at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 You and your family are in my thoughts and prayers

Carrie :)

RE: Anyone out there with Neuroendocrine Cancer?

by angel1973 on Tue Dec 08, 2009 05:55 PM

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Hi Jodi, My name is Angel Sanchez. I am sorry to hear that your husband was diagnosed with this type of cancer. I was diagnosed with the same cancer in august of 2009. I also am at a stage 4. Currently going through chemo and i am receiving Cisplatin and VP-16. Since starting treatment, Dr. said 85-90% of masses has disappeared. They are treating it very aggressively. I noticed you did not mention anything about VP-16. Ask the Dr about it and hopefully it will help out.

RE: Anyone out there with Neuroendocrine Cancer?

by rjoyner on Mon Feb 22, 2010 05:30 PM

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Hello,

My Husband was  diagnosed  in 2001 with a neuroedocrine in his pancreas, he had the tumor removed and underwent radiation for seven weeks.  In 2008 we was diagosed with liver mets ( he had over 40 tumors).   He was given sandostatin which had no affect on the tumors.  I took him to CTCA where thy did a procedure called chemembolization, His tumor are now minimul and most have dissapeared.

RE: Anyone out there with Neuroendocrine Cancer?

by Tigerlillygal on Sat Mar 06, 2010 06:35 AM

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Yes, I have had stage 4 neuroendocrine pancreatic cancer for about 8 years with liver metastases.  For me, the most effective treatment has been Indium-111 administered in three two-week sessions six months apart by Excel Diagnostics in Houston.  Medicare and BC/BS covered everything.  It has been relatively stable on Sandostatin ever since then.  I receive IM injections of this drug every two weeks at my oncologist's office.  The drug is often used for cancer patients with diarrhea, but in the case of neuroendocrine cancer, our tumors have receptors for it, and it actually stifles growth of the tumors.  

I have been awaiting RAD001 to be approved by the FDA specifically for neuroendocrine cancer after a clinical trial which was scheduled to end Dec. 31 of 2009.  It is on a "fast track" for approval because it is needed by so many.  The drug is already being used in kidney cancer treatment under the name Afinitor and has been very effective from what I understand.  

Chemoembolization has also been effective for some. Keep in mind, there is usually some risk involved in many treatments; however, I was becoming ill with symptoms which all have been gone since having the Indium-111 radiation to the liver.  However, there was profound fatigue for awhile afterward, and I now have breast cancer and possibly thyroid cancer.  I don't know the reason for this, but I still feel fine. 

Please find the website www.carcinoid.org .  You will find all kinds of medical articles and support groups and a phone number to call for professional advice regarding neuroendocrine cancer.  There may even be a support group near where you live.  

 

 

 

 

RE: Anyone out there with Neuroendocrine Cancer?

by c_survivor2010 on Tue Jun 01, 2010 03:38 AM

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On Mar 06, 2010 6:35 AM Tigerlillygal wrote:

Yes, I have had stage 4 neuroendocrine pancreatic cancer for about 8 years with liver metastases.  For me, the most effective treatment has been Indium-111 administered in three two-week sessions six months apart by Excel Diagnostics in Houston.  Medicare and BC/BS covered everything.  It has been relatively stable on Sandostatin ever since then.  I receive IM injections of this drug every two weeks at my oncologist's office.  The drug is often used for cancer patients with diarrhea, but in the case of neuroendocrine cancer, our tumors have receptors for it, and it actually stifles growth of the tumors.  

I have been awaiting RAD001 to be approved by the FDA specifically for neuroendocrine cancer after a clinical trial which was scheduled to end Dec. 31 of 2009.  It is on a "fast track" for approval because it is needed by so many.  The drug is already being used in kidney cancer treatment under the name Afinitor and has been very effective from what I understand.  

Chemoembolization has also been effective for some. Keep in mind, there is usually some risk involved in many treatments; however, I was becoming ill with symptoms which all have been gone since having the Indium-111 radiation to the liver.  However, there was profound fatigue for awhile afterward, and I now have breast cancer and possibly thyroid cancer.  I don't know the reason for this, but I still feel fine. 

Please find the website www.carcinoid.org "" target="_blank" rel="nofollow">http://www.carcinoid.org " target="_blank" rel="nofollow">www.carcinoid.org .  You will find all kinds of medical articles and support groups and a phone number to call for professional advice regarding neuroendocrine cancer.  There may even be a support group near where you live.  

 

 

 

 

Yes, I too have stage 4 neuroendocrine carisoma cancer. It was diagnosed in Jan 2010. My primary site is in my rectum with metastases in L1 vertebrae and lungs (numerous small nodules in all lobes) I was treated with radiation for 28 days, chemotheraphy - oxaliplatin and zoloda for four weeks. During the latter part of the treatment cycle, I had horrible diarrhea - in the hospital for 11 days. After this treatment, I got 6 weeks to recover. Restaging CT showed more than 50% reduction in primary tumor. I have started a 6 months treatment cycle using Folfox. This includes oxaliplatin, FU5 in a 46-hour pump and Folinic acid (leucovorin). My next CT scan is 6/9. That will tell us if this treatment is working -- sure hope so!!

By the way, my type of cancer is NOT carinoid - it is rapid growing and nasty!! Thank heavens it responds to radiation and chemo.

RE: Anyone out there with Neuroendocrine Cancer?

by Gail_C_2 on Wed Jun 30, 2010 08:43 AM

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Jodi,

there are several of us out here on this website who have neuroendocrine cancer but I think most have the known primary, for me, it is the pancreas with mets to the liver. I was treated with streptozosin, 5fu as well as adriamycin, that was my cocktail. I received 8 months of chemo to shrink the very large tumor on my pancreas as well as several on my liver. After successful response to this treatment, I became eligible for surgery. I had my surgery 7/09 and now receive a sandostatin LAR injection every 28 days. I still have some tumors on my liver, and they are gradually shrinking.

Having an unknown primary site seems difficult for me to understand. Have you rec'd a 2nd opinion? I highly recommend that...even if it means more testing for your husband. I received 3 opinions as I wanted to be absolutley sure what we were dealing with as well as options.

Best of luck to you....please let us know how your husband is doing.

Gail

RE: Anyone out there with Neuroendocrine Cancer?

by TutuSandy on Fri Sep 10, 2010 06:31 PM

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My PET CT scan of June 1, shows both typical head and neck cancer and a very aggressive part called neuroendocrine tumor; this was after major surgey on April 19 to remove the large cancerous tumors in my neck area.  I was then treated w/Cisplatin, and just 2 weeks ago had a 2nd tumor in the neck removed.  I am starting a weekly regimen of erbitux, but do not believe anything will change for me.  I wish I could offer hope, but I'm looking for that myself.

RE: Anyone out there with Neuroendocrine Cancer?

by jessica16 on Wed Oct 27, 2010 11:25 PM

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Hi my name is Jessica. I dont have this type of cancer but my grandpa does. My grandpa was doing really well when he first got diagnosed which was about two weeks ago. They said he has some very small tumors in his liver and that there is some in the "good" side of his pancreas. Now adays he is so sickly looking and not really apprehensive to what is going on with him. I think that this cancer moved a lot faster then it should have. I have heard that this cancer maybe slow moving but it has the chances of changing in an instant. My grandpa is doing some kindof chemo where he takes pill but im not 100% sure what it exactly is. Does your husband have to take water pill and does his legs swell up? Sorry i couldnt answer your questions.

RE: Anyone out there with Neuroendocrine Cancer?

by Perimother on Tue Jan 31, 2012 09:41 PM

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I am wondering how you and maybe the others who posted last year here are doing? My sister has this as well. Diagnosed last year. I want to start some research . Anything you can tell me will me will help. I hope you have continued to heal.
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