islet cell tumors/neuroendocrine tumors

Hello,

     I am a 45 year old mom of two.  I feel blessed to have been dealing with pancreatic cancer since 2000.  I still have five tumors that refuse to go away.  To date I have had four surgeries alone with chemo to keep me going.  I was wondering if anyone else is fighting my same battle. 

Dog Lover

 

 

How have you survived this disease for 7 years?!  What was your diagnosis and what kind of treatment have you had?  My 46 y/o brother was just diagnosed in January, is not a candidate for the Whipple, and has heavy duty chemo every two weeks.  He's actually doing much much better than his doctors anticipated but we've certainly not heard of such a long-term prognosis.  Congratulations!

Susan

I have neuroenocrine tumors in my liver-have about 40% of my liver left.  Slow-growing, the doc thinks I have had them for many years, was just diagnosed in Jan. 07.  I'm a 54 year old mom of two (24 & 25 with a 4 y/o granddaughter), but still a mom even though they are grown and not at home anymore.  I'm sure the last several years have been difficult for you and I wish you well in your continued fight against cancer.  I'm waiting to get into a clinical trial for seneca valley virus, so not on any chemo now-what I was on wasn't really working very well anyway. 

Dear Whiteriver,

     Sounds like you've been through the same thing.  I too have had 60% of my liver removed.  It wasn't a fun surgery.  I take "sando" shots for my tumors and they seem to keep my tumors from growing.  They don't shrink them but they stay approximately the same size. My doctor has told me that when they begin "acting up" or growing, they must be removed.  Until then, I take a shot every three weeks for maintenance.  I too tried the chemo no success.  It was a waste of my time and energy.

     If you have a minute, tell me more of this clinical trial you hope to join.  I'm always open to new treatments.  Sometimes I feel like a lab rat.  Ha-ha. 

 

Toodles

Dog Lover 

 

    

On 6/22/2007 Whiteriver wrote:

I have neuroenocrine tumors in my liver-have about 40% of my liver left.  Slow-growing, the doc thinks I have had them for many years, was just diagnosed in Jan. 07.  I'm a 54 year old mom of two (24 & 25 with a 4 y/o granddaughter), but still a mom even though they are grown and not at home anymore.  I'm sure the last several years have been difficult for you and I wish you well in your continued fight against cancer.  I'm waiting to get into a clinical trial for seneca valley virus, so not on any chemo now-what I was on wasn't really working very well anyway. 

 

This is to everyone new on this board that has neuroendocrine tumors.  I am 45 and was diagnosed in 2000 with non functioning islet cell carcinoma.  I had whipple in Aug of 2000 and have done fine until October of 2006 when mets showed up in liver, pelvis, spine and abdomen.  I went to Moffett Cancer Center in Tampa and saw Dr. Larry Kvols who is a neuroendorcine specialist.  It was suggested to start a brutal chemo regimen which I was not happy with..I knew the chances of it working were minimal and I'd probably get very sick doing it.  I began my own search, and ended up find Dr. Thomas O'Dorisio at University of Iowa.  He is also a specialist.  After my initial appointment which he spent over 2 hours with me, he suggested I might be a candidate for Y-90 treatment that was being done in Switzerland.  Now before you say, no way..Let me say, I am tumor free!!!  The treatment was painless and no side effects.  Clinical trials are in their final stages for FDA approval for here in states.  I will gladly send anyone the information I have regarding this treatment..Or feel free to visit Dr. O'Dorisio's website..In addition, Dr. Eugene Woltering at LSU and Dr. John Warner in New York can provide information.

Sincerely,

Marcie Ortiz, RN, BSN, MSM

 

Marcie

I remember talking with you about this.  You used Sandostatin to radiosensitize the tumor?  Was Zevalin the drug you used?  Anyway, congrats on the great results and prayers for continued success.

 

On 6/27/2007 Oncrx wrote:

Marcie

I remember talking with you about this.  You used Sandostatin to radiosensitize the tumor?  Was Zevalin the drug you used?  Anyway, congrats on the great results and prayers for continued success.

Hello..

Yes, I remember talking with you before I went to Basel, Switzerland..I went over for a total of two treatments using Internal Radiation with Yttrium-90-DOTATOC, which is a radiolabeled somatostatin analogue.

8 weeks after the first treatment, all the tumors were necrotic and I only had one left in the liver which was 50% smaller..I had my second treatment over Labor Day and will have my MRI's at the end of July.  I feel great!!  Only side effect is some low blood counts which will rebound in the next 4 weeks..

I am totally amazed not more people with neuroendocrine tumors seek this treatment..I understand the cost and that some insurances don't pay, but more and more are paying with a little push and this treatment is suppose to be undergoing final clinincal trials here in states before final FDA approval...

All I know is it worked miracles for me and I'd like to spread the word!!!

If you want me to send you the handout from the University of Basel, I will gladly forward it to you..

Good hearing from you..Marcie

I forgot..I did the Octreotide(Sandostatin) shots for a few weeks..but really I don't think I needed to as I was unsympotomatic from the get go..but I did them before going over for my first treatment in Basel..Over there, the Professor said I didn't need to do them unless I had symptoms..and I didn't like the side effects..weight gain..:))

 

Hi, I had Islet cell tumor in the head of the Pancreas, had a whipple and survived since 1989-90 with no chemo,etc.  What you say is amazing and I am going to save it.  Good luck, be well. L

 

On 6/27/2007 Marcie77 wrote:

This is to everyone new on this board that has neuroendocrine tumors.  I am 45 and was diagnosed in 2000 with non functioning islet cell carcinoma.  I had whipple in Aug of 2000 and have done fine until October of 2006 when mets showed up in liver, pelvis, spine and abdomen.  I went to Moffett Cancer Center in Tampa and saw Dr. Larry Kvols who is a neuroendorcine specialist.  It was suggested to start a brutal chemo regimen which I was not happy with..I knew the chances of it working were minimal and I'd probably get very sick doing it.  I began my own search, and ended up find Dr. Thomas O'Dorisio at University of Iowa.  He is also a specialist.  After my initial appointment which he spent over 2 hours with me, he suggested I might be a candidate for Y-90 treatment that was being done in Switzerland.  Now before you say, no way..Let me say, I am tumor free!!!  The treatment was painless and no side effects.  Clinical trials are in their final stages for FDA approval for here in states.  I will gladly send anyone the information I have regarding this treatment..Or feel free to visit Dr. O'Dorisio's website..In addition, Dr. Eugene Woltering at LSU and Dr. John Warner in New York can provide information.

Sincerely,

Marcie Ortiz, RN, BSN, MSM

 

 

My mother (67) was diagnosed with neuroendrocrine cancer in 2004.  Could not find primary - but it had matastesized to her liver.  Too many small tumors in the liver to be a surgery candidate.  She had one round of Chemo and then did well for a while.  In March 2007 they went in to find what they thought was a small bowel intercesion to treat extreme stomach pains she was having.  They found no intracesion but finally found small tumor (about quarter sized) on her pancreas (likely the primary tumor).  They did not remove it since it was so small and not causing any real problem.  But they did find that her liver has a lot of cancer in it.

After the recent sugery, Her local oncologist has recommended doing very targeted treatments on the liver to try to kill some of the liver cancer (do not remember name of procedure - but it is the one where they block blood supply to parts of liver).  Dr's haven't said this but I think they are concerned that her liver could fail if they don't aggresively go after the cancer.

 We recently discovered Dr. O'Dorisio in Iowa City and visited him.  Very good experience as mentioned in previous message.  Had all tissue samples sent to him.  He is recommending Sandostatin immediately and needs a PET scan to determine if she is elligible for clinical trial drug.  He mentioned what is being done in Europe - but did not come out and recommend it ---- yet.  I've also read about a suppliment called Ambrotose and also saw many posting about Excel Diagnostic Treatment in Houston.  Has anyone on this message thread had any experience with either?

At present, Mom is suffering many ailments.  Dr's haven't said they are related to cancer - but I think they probably are.  Her quality of life is going downhill fast.  Any advice would be appreciated.

I feel for anyone with this disease and wish you all the best.

 Thank you.