Neuroendocrine Cancer

 Hi there, first let me say thank you so much for responding to my email.  and i apologize that it has taken me forever to reply back.  our story starts with my husband who is 35 yrs old being diagnosed with Metastatic Pancreas Nueroendocrine Cancer 13 days after the birth of our first son.  my husband was diagnosed on Nov 29th 2007.   whenever i have to recount our story to someone it brings it all up again and my emotions of course are very high.  we are still so new to all of this.  just hearing that you had what my husband had and you had the primary cancer source removed and then a liver transplant gave us soooooo much hope when we read your postings. so thank you for the hope you have already given us.  i just kept telling our family when this all happened we must keep hope, without hope what do you have.  on Jan 28th Mark had the primary tumor removed from the Tail of his Pancreas.  and now we go back to UCLA on March 17th for a 3 day Liver Transplant Evaluation, in hopes of getting on the list.  my husband has 8 tumors on his liver.  so sorry it has taken me so long to reply.  i am taking care of the newborn and back to work full-time, so my life is constantly on hyper-speed.  any advice on the liver transplant aspect of things would be so helpful.  we know how rare it is for cancer patients to get a liver transplant, and when i saw your posting on the internet back in December your story is the hope we needed to hear.  again any advice you have would be great.  currently my husband is having Sandostatin injections once a month to treat the liver tumors.  did your oncologist have you on a regime of things before you had your transplant?  how long did you have to wait once on the list to receive the transplant.  and please know my husband and i are so excited to hear how fantastic you feel.  that makes us so happy.  your family must be so thankful.  again thanks for your time and for reading my email.  

sincerely,

Jenna 

On 2/13/2008 Kimgee65 wrote:

Hi,

 I had my liver transplant in Dec. 2005 and am doing great now.  I did have one small tumor in the original location (pancreas) return in April 2007, but they removed it easily and I haven't had any additional problems.  The surgeons told me that with neuroendicrine tumors, they are likely to return over time in the original location, if any cells were missed during the surgery, so it wasn't a surprise.  I have a CT scan about every 6 months, have labs drawn once a month to check my liver levels, but I'm in the best health I've ever been in.  The liver transplant is a big surgery, and I had several complications (not due to the transplant itself), but my liver is doing great.  Once you get through the initial surgery, labs are done frequently and it takes a while to get back on your feet, but my life is pretty normal.  I take very few anti-rejection meds, (only 1, actually) and I do everything I used to do before the surgery.  I do take a lot of vitamins and nutritional supplements and follow a diet of fresh (and organic) fruits/vegs, lean meats, lots of water, green tea, exercise, and get plenty of sleep.  I think that has helped a lot, in regards to my health and not much recurrence of tumors.  I hope things go well for your husband.  If I can answer anymore questions, just ask.

 

On 10/4/2006 Survivor8 wrote:

Hello, Abbysmom, Kimgee, Tigerlillygal, Nicoleta, Downunder, Shilpi, and Anyone else. This is my first time at the site. I am an 8 year cancer survivor!!!!....using all natural treatment. I was diagnosed with stage three of three stages of adenocarsonoma breast cancer...the fastest and deadliest kind which had already spread . After surgery, I postponed the chemo and radiation because I was so ill from pneumonia, adrenal exhaustion, hypoglycemia, pernicious anema, allergies, and osteoarthritis and looked for ways to get healthier, first. That led me to doctors and treatments from Oklahoma to Denver, but I have overcome the cancer and regained my health. I not only survived....I now thrive after years of illnesses. Besides my own success, I personally know of such results with lung, bone, brain, and pancreatic cancer. If anyone wants more information of using Ambrotose and getting it at the lowest cost, I know how to do so. You may email me --- Message edited by CancerCompass staff: for personal protection, email address and phone number removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----and ask for Linda. Blessings to all.

Hi just found out that my uncle who is 69 yrs old has pancreatic neuroendocrine tumor and is about to have the whipple procedure done in about two weeks.we are very confuse about the procedure since the tumor is only 2cm and not cancer .if anyone out there has gone though this please contact me asap.

thanks a head of time                              vicki

Hello-I sent you an Email and I forgot to check (when someone responds).

I have been told I have an islet cell tumor (don't know what kind).  I live in L'ville KY and wondered who you see. I hope you are doing well.

Thanks

Hi,

My mom was recently diagnosed with neuroendocrine cancer.

The tumor started in gallbladder and spread into liver.

The doctor said that average survival with this type of cancer is about year and half with chemo.  Your story started in the latter part of 90's which means over 10 yrs of fighting this cancer.  I would like to know if there is anything I can do to extend her life and possibly cure the 'uncurable' tumor.