Neuroendocrine Cancer

On 12/10/2007 garzy wrote:

 

On 11/16/2005 Tigerlillygal wrote:

I have neuroendocrine pancreatic cancer surgically removed in 1998, but found out it had metastasized to the liver in 2002 and is inoeperable. I started receiving a monthly injection of Sandostatin and am still feeling wonderful, and my cancer has not grown since February.

My husband has inoperable neuroendocrine lung, liver and abdomen cancer and he has just had his first sandostatin injection, do you feel that has helped you?  Garrett has no other symptoms except stomach bloating and fatigue.  He does not have the diaheria or flushing I keep reading about.  It took us 3 months to get a diagnosis. We need to find out other options of treatment.  Gail Byrnes, Atlanta, GA.

Gail, I have had neuroendocrin tumor since 2002, originally  it was mainly in the pancreas and liver, but now seems to be moving. I have been on Sandostatin for over two years and it was recommended both by medical oncologists and surgeons. However, only when the tumor was non moving Sandostatin was recommended on a stand-alone basis; in all other cases, I was given also many other chemos (various combinations of really powerful ones). I was at the George Washington University Hospital in DC at the time, with prof. James Ahlgren. Hope this helps. Marco

On 7/5/2007 Momoffive wrote:

I was diagnosed in aug '99 w/ neuroendocrine tumor of the pancreas known as metastatic malignant insulinoma. The tumors can make insulin. I had chemo, surgery (got all the cancer in pancreas and liver)..recurrence in july 01, used supplements etc...tried thalidomide/temedor; in nov 03 had the Lutieum octreotate in Rotterdam netherlands, 4 treatments in one year. Successful shrinkage of tumors but 7 mos after the last therapy, cancer started growing so quickly, I had an embolization, then started on abraxane, carboplatinuim, avastin, shrinkage again, stabilization for 6 mos. then started a trial of RAD001 at MD Anderson inNOV 06 until may 07. off treatment but am being considered for the indium 111 in houston at excel. Anyone have any experience w/ that...the cost? was it covered by insurance? any damage to kidney or bone marrow evident?

anyone wanting more info on how I have survived for 8 yrs w/ my disease, email me....thanks. taj brown, tx

My wife has a large liver adenocarcenoma secondary to bile duct cancer.

With either the diag of biliary or unknown primary, there are little resources and trials available.

The doctors first diagnosed it as unknown, but with an initial CA19-9 of nearly 2700

Gemzar/Carboplatin worked for 4 months

Xeloda and Oxaliplatin, failed to work, we had some progression ann a jump in CA 19. 

We are trying to use the G-FLIP protocol with Dr. Howard Bruckner, but have insurance problems leaving Mass.

I would like to keep my wife around for at least another 8 years, any ideas would be appreciated.

Thanks

Murray

hi there, i read your post.  my husband has similar story to yours.  he has nueroendocrine pancreatic cancer.  he just had tail of pancreas removed where his primary tumor was.  his cancer has metastasized to his liver and they have told us we are a candidate for a liver transplant.  i wanted to follow up with you and see where you are with your treatment and if did have your liver transplant.  thanks for any advice you may have.

thanks,

Jenna 

On 11/20/2005 Kimgee wrote:

I was approved for a liver transplant last December and I will say that it is very rare to get approved if you've had cancer. If a person's body is prone to grow cancerous cells, they assume that it will return somewhere else in the body eventually. However, my doctors ran numerous tests all over my body and couldn't find cancer anywhere else except my liver. (My original tumor was in my pancreas, but they were able to remove the entire tumor, which was about the size of a grapefruit, so they said if it came back it would be in the liver, which it was.) It is a long process to get approved for transplant and my doctors worked diligently to get me approved. They felt they could prolong my life long enough to raise my children. Even though I had the transplant, I'm not out of the woods. Like I said, if your body produces cancerous cells, it's likely to do it again. That's why I take the Ambrotose. I really feel that my cells are working properly now and that it won't come back if I continue with complete nutrition. I also cut out junk food, sugar, most red meat and drink green or black tea everyday. I have never heard of the type of treatment that you are considering, but I know that there are all different types of tumors and it's possible that the pentreotide treatment would not have worked for me. My doctors said that there were very few drugs that were really effective on the liver and they felt that any type of chemo would make me sicker. I have a cousin that is a surgical oncologist and he has a few patients with cancer that metastisized to the liver and he has them on chemo and they have done pretty well, but he said that the tumors usually come back after the chemo is stopped. I live in Louisville, KY and have an excellent team of doctors that work at the Graham Brown Cancer Center. If you're not sure about your treatment options, I would suggest doing a lot of your own research on the web, as well as get a second opinion. Cancer is different in everybody and you have to find what works for your body.

 hi there, my husband has same cancer (except his was in tail and they removed the tail of his pancreas).  he was just diagnosed Nov 2007.  he has many tumors in his liver.  what treatments in the Netherlands did you husband have for these tumors?  thx for any advice you may have.

Jenna 

On 12/5/2006 Karina62874 wrote:

Hey all! I read all of the messages about the people's experiences with these neuroendocrine tumors. Let me tell ya' my story and we can trade info or what not. My husband was diagnosed in 2001 with a neuroendocrine tumor in his pancreas. It was in the head of his pancreas and was pinching his bile duct closed causing him to jaundice. This is the symptom that brought it to our attention. The doctors here in TN told him to go home and get comfortable there is nothing they can do for him. Someone told us about MD Anderson in Houston. We went there and they did the Whipple procedure and removed the tumor. All went great there but they discovered it had metastisized to his liver. Numerous tumors in his liver. MD Anderson suggested the treatments a couple of you were talking about at Excel in Houston, but at the time they weren't doing it and we went to the Netherlands. We went there 4 times for 4 treatments. They were done about every 2 1/2 months. His last treatment was almost 5 months ago. His last scan showed there wasn't any shrinkage, but that there had been no growth to the tumors since his scan in January so that is great news! The only problem he is having right now is VERY low blood counts, but they are improving. He is working everyday so it hasn't effected him too badly. I have never heard of the Ambrose and am definitely going to look into it. PLEASE guys, keep posting messages with updates and if I can help pass any info along please let me know.

Take care and God bless!
Karina

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.

 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.