Neuroendocrine carcinoma

artygman said:

I am a 50 yr old male diagnosed February, 2005 with neuroendocrine islet cell tumors. Primary in pancreas, with numerous mets in liver. Get blood and urine workup and the latest ib PET-CT-scans at the University of Chicago hopitals. To date, I have had no treatments of any kind. We are in a wait and see mode. M tumors are extremely slow growing, and in almost 2 years now, they have barely grown. I am in relativley good shape now, but at times have pain. The tumors are non-functioning. I am one who doesn't believe that you need to go to Sweden for quality care. I have been to Mayo Clinic and University of Chicago, and both are in total agreement about my treatment. If and when the time comes, U of Chgo has many options for me to treat the cancer. Any questions, I would be happy to answer in more detail.

helo, my husband nov 07 had neurodocrine on his pancreas tail removed, distal along with his spleen, now they found a lesion 7mm on his liver, they are doing a ct, octreotide scan and endoscopy, next week,please take a look at my web page or chat under leukemia , lymphoma or rare cancers and see if it sound like your case, my husband is 51 also, i have many ?

il6699 said:

Hi, I'm now at MD Anderson seeing Dr. James Yao. 2 weeks ago I was at Uppsala. Dr. Oberg found my cancer has high proliferation capacity after tissue statining and so has recommended me cisplatin + etopoxide. I think James Yao at MDACC will recommend me the same too. Who wants to share experince if your case is similar to mine? How should I prepare for it mentally and physically? Hi mherynk what does your wife have? Anything close to mine?

IL6699

Update on your treatment?
Are you still undergoing treatment? Did you try the cisplatin+etoposide? How did it work for you? Still seeing Dr. Yao? Please advise - I just finished 6 rounds of chemo with these druges - now what?

isletcell said:

What was your proliferation capacity?

Jen

you post
Hi My name is Steve and lived in canada brockville for 3 years as an expat from the us.

I have extebsive disease and a extensive cancer blog if inetersted. I am going for treatment inb germany for prrt and it is wonderful, Upsalla is not the only option. The imaging you mention in a earlier post is Pet Gallium 68 with Cat scan which is the gold standard for net imaging now, but not avaiable in north america.

if you want to know more, go to my blog at
http://renalcarcinoid.blogspot.com/

go to serach and enter Dr baum video in singapore conference for CNETS. It is wonderful and what got me headed in the right direction.

Btw, you have the same cancer as the famous Steve Jobs.....I wush youy well Jen

mherynk said:

Congratulations on getting into MDACC-it can be quite difficult. We had a second opinion with Dr. Yao at MDACC, but decided to stick with our current oncologist, Dr. Lynch, at methodist hospital across the street. It sounds like you and my wife have the same type of tumor-although hers probably originated in the cervix. Cisplatin and etoposide have been very effective in my wife. The most recent round of scans showed all the tumors were shrinking, no new ones, and a negative PET scan. Yeah! The cisplatin and etoposide regimen is very taxing and Kara is pretty much wiped out for at least 2 weeks after. The effects have gotten a little worse each time. I live in houston and work in the medical center, let me know when you will be at MDACC and I will come and visit you if you would like. Email me at mherynk@breastcenter.tmc.edu.

Dr. Lynch

Dr. Lynch was the best.  Hope for a good retirment for him.  He treated both my sister in laws.