Neuroendocrine Tumor (Poorly Differentiated)

My husband was diagnosed on December 6, 2007-one day after our 20th anniversary.  We have had a difficult time just getting a name for this horrible disease.  We have been told it is a Poorly Differentiated Neuroendocrine Tumor with Spinal Mets. 

We have completed 20 rounds of Radiation therapy which shrunk the tumor by more than 50% and just started chemotherapy yesterday.  We are doing a combination of Temodar and Avastin.

 We really like the facility that we are using but there is no specialist for this type of tumor in Utah.  How do you go about finding a specialist and deciding the best course of action?  We do not feel that we are getting enough answers or direction.

Any suggestions would be greatly appreciated!

Please research the carciniod cancer website.  We are using Dr. Eugene Woltering in Kenner LA and he is a specialist that deals with only neuroendocrine tumors.   I dont know if I can post his phone number but it is 504-464-8500.  If  this phone number is erased contact the Oschner Medical Center in Kenner Louisiana and ask for the main number for the nueroendocrine clinic attached to their hospital.  I dont know exactly what your husband has but mine has carcinoid cancer and it usually doesnt respond to traditionally chemotherapy.  Please  seek another opinion.  Hope this helps you.

God Bless

 

There is also a specialist in Portland Oregon that would be closer for you.  Look at the carcinoid cancer website.  I will send this information to you when I get home. 

Thanks so much for your responses.  Anything you can suggest is great, we are willing to look into any possible options and share as much information as we find.

 

 

On 1/15/2008 JustWinBaby wrote:

My husband was diagnosed on December 6, 2007-one day after our 20th anniversary.  We have had a difficult time just getting a name for this horrible disease.  We have been told it is a Poorly Differentiated Neuroendocrine Tumor with Spinal Mets. 

We have completed 20 rounds of Radiation therapy which shrunk the tumor by more than 50% and just started chemotherapy yesterday.  We are doing a combination of Temodar and Avastin.

 We really like the facility that we are using but there is no specialist for this type of tumor in Utah.  How do you go about finding a specialist and deciding the best course of action?  We do not feel that we are getting enough answers or direction.

Any suggestions would be greatly appreciated!

I am curious as to the treatment your husband is currently receiving?

My father was diagnosed with Neuroendocrine cancer of the pancreas with secondaries on his liver in November 2007. He has received a round of chemotherapy but on 11 March 2008 we were told the chemo was not working & there was nothing more to be done. They have given him 6 months. He has been referred to a pain doctor.

Like you our family also feels we are not being given enough answers and I am looking for any information you can possibly provide me with.

Daughterneedsadvice

 

I am not sure who is treating him, but I feel it is critical to see a specialist that deals with neuroendocrine tumors.  There are not many of them in the state.  I have recommended many times to many people the doctors that are treating my husband - his primary was small intestines with mets to the liver.  He is treated by Drs. Woltering/Boudreaux/Wang in Kenner Louisiana.  Actually just got home last night from a procedure on Wednesday.   Their number is 504-464-8500.  Best of luck to you.  Feel free to messaage me if you have further questions.

I really appreciate that information - the doctor your husband has appears to be coming up quite frequently in information I've been given.

 I will definately be looking into him hopefully he treats international patients.

Thanks again for all your help!

i had this in my neck and lung, it is gone, it must be rare because the doctors in my town never saw it they said things like funky, strange bird, i got upset and went to philly c.t.c.a, where i met dr. willis, i had 2 surgeries to remove it, then dr. willis did the ajuviant treatment in 2006 and it has not returned thankgod. does this have an assocation with a cell called merkle cell cancer? my cancer started in the 3rd layer of skin where the merkle cells live, it started in my neck and went on my lung, that is what the tumor was a poorely diff...neuroendocrin. i never did the association huh??

On 1/15/2008 JustWinBaby wrote:

My husband was diagnosed on December 6, 2007-one day after our 20th anniversary.  We have had a difficult time just getting a name for this horrible disease.  We have been told it is a Poorly Differentiated Neuroendocrine Tumor with Spinal Mets. 

We have completed 20 rounds of Radiation therapy which shrunk the tumor by more than 50% and just started chemotherapy yesterday.  We are doing a combination of Temodar and Avastin.

 We really like the facility that we are using but there is no specialist for this type of tumor in Utah.  How do you go about finding a specialist and deciding the best course of action?  We do not feel that we are getting enough answers or direction.

Any suggestions would be greatly appreciated!