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.