Specialist Search For Neuroendocrine Cancer

Please respond quickly if you know of a Specialist in this type of cancer:
Poorly Differentiated Neuroendocrine

Thank you*

Cut and pasted from Islet Cell:
islet cell
11-05-2004
02:59 AM EST Re: Seeking a miracle for my dad who had...

Hi there!

I live in canada too and waited several months to see "the only neuroendocrine specialist in canada" and was refered to her by the carcinoid cancer foundation. Dr, Janice Pasieka.At foot hills medical center in Calgary Alberta.

I dont know if you are currently seeing her team or not but, It would be worth a visit. However, the world specialists acording to my research are in Upsalla Sweeden. Dr. Kjell Oberge. His contact information is available at the carcinoid cancer foundations web site. Also there is an ACOR site that I think I saw especially for lung noids.

I know some drugs for neuroendocrine tumors are only available in europe and are not approved here yet but slow tumor growth. This is something I would take up with the specialists in sweeden. I sent my whole chart there and they reviewed it. Im sure you can do the same.

I hope this helps,

Jen

I have neuroendocrine cancer of the pancreas. Was referred to Dr. Pommier at Oregon Health Sciences University. Best wishes. Marie

I've been being treated for poorly differentiated neuroendocrine cancer since February; just finished my 8th 3-day chemo session. Dr. Assikis of Emory's Winship Cancer Center, Atlanta, GA, is handling my treatment---but Emory has seen very few of this type cancers. I am having great success with the use of Etoposide and Carboplatin (the same two chemo agents usually used to treat small-cell lung cancer). Main fast-growing tumor that surrounded my aorta and spine, the size of a grapefruit when chemo started, is now the size of a cashew. Good luck. R.Walker

Please let me know if your cancer was "poorly differentiated neuroendocrine cancer" or was another type of nc. We have had a hard time finding a specialist that deals with the "poorly differentiated" neuroendocrine cancers; I am being treated at Emory, Atlanta, GA, currently and am having good results from the chemo. However, when this stops, I want to go see someone that actually specializes in this. Thanks. R.W., Carrollton, GA

My husband has been dx'd w/ neuroendocrine tumor of the pancreas w/ 2 mets to liver and 1 lung met. He is on cisplatin and etoposide ( same as treatment for small cell lung cancer i believe.) If the tumor is poorly differentiated.... as in your case, could a specialist in this field help with that? I'm not sure. Is your onc a specialist with this type of tumor? We are not getting enough info from onc on husbands and are considering MD Anderson. Has anyone had any experience with MD. I hear they have a top notch in Dr Yao.
Sissy

I am wondering about treatments. I currently
receive my medical treatments at Univ. NE Med.
Ctr. Thus far I have had a whipple, a
splenectomy, a hysterectomy and emergency
surgery to take care of septic infection
following chemoablasion of liver lesions. I
still have liver lesions and my Doc thinks we
will burn them off soon. I am curious about how
other people have been treated at other medical
facilities? What other treatments are out
there?

Hi,
You do not say where you are located. There are quite a few specialists. You can get a partial list on www.carcinoid.org. There is a patient's conference in Portland Oregan this fall from September 28th to 30th. Information is on the www.carcinoid.org site. Good luck. Harry

My husband was dx'd with neuroendocine tumor of the gastric antrum and part of the duodenum, with multiple liver metastases. He is on carboplatin and VP-16, in August of '06. Our Oncol. is not a specialist in this area and we, too, are not getting the information we feel that we need. We have talked to MD Anderson and they are very good and supportive. They want us to finish the 6 rounds of chemo, do the next c-scam and then make an appointment to go to Texas. Did you go to MD Anderson?

My mother was diagnosed with poorly differentiated neuroendocrine cancer about 3 years ago. She is being treated by Dr. Kessinger at UNMC. Went through one round of Chemo and they have since been monitoring Chromogamin A markers in her blood. They never found the primary tumor - just that it had methastised to her liver. She did well for a while but is now having symptoms no one will say is linked to the cancer. It is a real mystery.