Neuroendocrine, Islet Cell Pancreatic Cancers..Non Functioning or Functioning

Dear All,

I have been fighting Pancreatic Cancer since August of 2000 when I was first diagnosed..I am now completely tumor free.  I have posted many emails here asking for help and receiving information.  For all of you still suffering, I will continue to share what information I have that might help someone.  Remember, I was diagnosed with a Non Functioning Islet Cell Carcinoma..I had whipple but the cancer had spread..I ended up with tumors from spine down to pelvis..including many in liver..I NEVER did chemo or radiation because as a nurse I researched heavily the effects of chemo for this particular cancer and could not find anything to support that chemo had any true advantage..My research did lead me to Dr. Thomas O'Dorisio at the University of Iowa..I saw him and had the treatment of INTERNAL IRRADIATION OF NEUROENDOCRINE TUMORS WITH YTTRIUM-90-DOTATOC, A RADIOLABELED SOMATOSTATIN ANALOGUE,

I know this treatment isn't for everyone, HOWEVER, it has taught me that there are effective cures for certain kinds of pancreatic cancers..

REMEMBER..

FIND OUT SPECIFICALLY WHAT KIND OF PANCREATIC CANCER YOU OR YOUR LOVE ONE HAS BEEN DIAGNOSED WITH.

FIND A SPECIALIST FOR YOUR SPECIFIC CANCER

SEEK MORE THAN ONE OPINION BEFORE EMBARKING ON ANY KIND OF TREATMENT

SEARCH THE MANY PANCREATIC MESSAGE BOARDS FOR PATIENTS HAVING YOUR SIMILIAR TYPE OF CANCER TO SEE WHAT KIND OF TREATMENTS ARE AVAILABLE AND WHERE THEY ARE BEING DONE.

ASK QUESTIONS!!!

Good luck to everyone!!

Marcie Ortiz, RN, BSN, MSM

dear marcie,its good to hear the news that your tumer is gone did you do the treatment in the u.s. or in europe ??what will you be doing next? just wait and see? or any medication ? would love to talk with you ,my son did the treatment in basil but he is only stable and one doctor wants him on chemo and the other doctor feels he should do nothing.....we will go to see a surgeon next week ,i would love to speak to you .......wdebby..

Hi,Thanks so much for your info.

Can you tell me roughly what this type of procedure entails?

Do you think it would be suitable for people who are already very weak with the disease?

On 7/24/2007 Marcie77 wrote:

Dear All,

I have been fighting Pancreatic Cancer since August of 2000 when I was first diagnosed..I am now completely tumor free.  I have posted many emails here asking for help and receiving information.  For all of you still suffering, I will continue to share what information I have that might help someone.  Remember, I was diagnosed with a Non Functioning Islet Cell Carcinoma..I had whipple but the cancer had spread..I ended up with tumors from spine down to pelvis..including many in liver..I NEVER did chemo or radiation because as a nurse I researched heavily the effects of chemo for this particular cancer and could not find anything to support that chemo had any true advantage..My research did lead me to Dr. Thomas O'Dorisio at the University of Iowa..I saw him and had the treatment of INTERNAL IRRADIATION OF NEUROENDOCRINE TUMORS WITH YTTRIUM-90-DOTATOC, A RADIOLABELED SOMATOSTATIN ANALOGUE,

I know this treatment isn't for everyone, HOWEVER, it has taught me that there are effective cures for certain kinds of pancreatic cancers..

REMEMBER..

FIND OUT SPECIFICALLY WHAT KIND OF PANCREATIC CANCER YOU OR YOUR LOVE ONE HAS BEEN DIAGNOSED WITH.

FIND A SPECIALIST FOR YOUR SPECIFIC CANCER

SEEK MORE THAN ONE OPINION BEFORE EMBARKING ON ANY KIND OF TREATMENT

SEARCH THE MANY PANCREATIC MESSAGE BOARDS FOR PATIENTS HAVING YOUR SIMILIAR TYPE OF CANCER TO SEE WHAT KIND OF TREATMENTS ARE AVAILABLE AND WHERE THEY ARE BEING DONE.

ASK QUESTIONS!!!

Good luck to everyone!!

Marcie Ortiz, RN, BSN, MSM

 

 

 

Hi Marcy,

 Great  to read your posting. I was diagnosed with pancreatic cancer in the tail in Apr 06 and since there were mets to the liver, they did not want to remove it. It was large, 14x10x9.5 cm and went on chemo, 2 grams of Gemzar and 100 mg of Tarceva. Nasty stuff!  5 months later I wound up at Stanford and found out it was a neuro-end. tumor and Dr. Fisher said that no meds were effective. He also said that you can live a long time with this type. Other than a lot of supplements, I take a baby asperin to keep my blood thin and live a normal life. The CBC and CMP blood tests are all normal. The CEA is 2.5 and the CA19-9 is 10.The only test that is high are the pancretic polypeptides. Normal is 300 and mine are 3000. I reallycan not find a lot of info on the p. polypeptides. Do you have any good info?

Yesterday went back to stanford for scan and next week I find out the results. Eversince I was diagnosed I have been going to Reno for Chelation theraphy and acapuncture. I am active and run 5 miles a week.

Look forward to yourreply and thoughts.

Bill d.

Dear Marcie,

I have Pancreatic islet which has spread to the liver.

I am not sure if the the YTTRIUM-90 will work on the Pancreas.

They would use this to treat my liver. What side effects do you

feel? Did it get rid of the cancer in the other areas?

Regards,

Ben H

Thanks for putting this information out there for all of us to read.  Until this morning I had no idea this treatment was available.  A friend we met at Mayo said she had just returned from UI and will be heading to U of Basel in Oct for the treatment.  I am just starting to research this because my spouse has Islet cell.

Some information that I thought I would share with everyone.  My spouse had a liver transplant at the Mayo Clinic in Jax, FL (Oncologist is out of Rochester, MN).  The cancer came back rather quickly but he is now taking a drug called Rapimmune,  Rapimyacin or another name is Sirrilamus (not sure on spelling).  This drug has has cancer fighting properties as well as immunosupresant ones.  In the few months that he has been taking it the cancer seems to be stable. 

Gods Grace to everyone.

On 8/4/2007 Bill d. wrote:

 

On 7/24/2007 Marcie77 wrote:

Dear All,

I have been fighting Pancreatic Cancer since August of 2000 when I was first diagnosed..I am now completely tumor free.  I have posted many emails here asking for help and receiving information.  For all of you still suffering, I will continue to share what information I have that might help someone.  Remember, I was diagnosed with a Non Functioning Islet Cell Carcinoma..I had whipple but the cancer had spread..I ended up with tumors from spine down to pelvis..including many in liver..I NEVER did chemo or radiation because as a nurse I researched heavily the effects of chemo for this particular cancer and could not find anything to support that chemo had any true advantage..My research did lead me to Dr. Thomas O'Dorisio at the University of Iowa..I saw him and had the treatment of INTERNAL IRRADIATION OF NEUROENDOCRINE TUMORS WITH YTTRIUM-90-DOTATOC, A RADIOLABELED SOMATOSTATIN ANALOGUE,

I know this treatment isn't for everyone, HOWEVER, it has taught me that there are effective cures for certain kinds of pancreatic cancers..

REMEMBER..

FIND OUT SPECIFICALLY WHAT KIND OF PANCREATIC CANCER YOU OR YOUR LOVE ONE HAS BEEN DIAGNOSED WITH.

FIND A SPECIALIST FOR YOUR SPECIFIC CANCER

SEEK MORE THAN ONE OPINION BEFORE EMBARKING ON ANY KIND OF TREATMENT

SEARCH THE MANY PANCREATIC MESSAGE BOARDS FOR PATIENTS HAVING YOUR SIMILIAR TYPE OF CANCER TO SEE WHAT KIND OF TREATMENTS ARE AVAILABLE AND WHERE THEY ARE BEING DONE.

ASK QUESTIONS!!!

Good luck to everyone!!

Marcie Ortiz, RN, BSN, MSM

 

 

 

Hi Marcy,

 Great  to read your posting. I was diagnosed with pancreatic cancer in the tail in Apr 06 and since there were mets to the liver, they did not want to remove it. It was large, 14x10x9.5 cm and went on chemo, 2 grams of Gemzar and 100 mg of Tarceva. Nasty stuff!  5 months later I wound up at Stanford and found out it was a neuro-end. tumor and Dr. Fisher said that no meds were effective. He also said that you can live a long time with this type. Other than a lot of supplements, I take a baby asperin to keep my blood thin and live a normal life. The CBC and CMP blood tests are all normal. The CEA is 2.5 and the CA19-9 is 10.The only test that is high are the pancretic polypeptides. Normal is 300 and mine are 3000. I reallycan not find a lot of info on the p. polypeptides. Do you have any good info?

Yesterday went back to stanford for scan and next week I find out the results. Eversince I was diagnosed I have been going to Reno for Chelation theraphy and acapuncture. I am active and run 5 miles a week.

Look forward to yourreply and thoughts.

Bill d.

Hi Bill,

   I was dx with neuroendocrine cancer May 2007 and have a large tumor about the same size as yours (14 cm about a size of a cantelope).  In May, they removed (liver resection) a tumor about the size of a baseball in my liver and that's when they found out what type of tumor/cancer I have.  Now the big tumor is still in my liver which they are trying to shrink by chemoembolization and I have a couple of small other tumors also in the liver.  I can barely walk, I can not drive, and have no energy.  I'd like to know how you are able to run 5 miles and I can barely walk.  What kind of treatment are you getting and where?  I am starting to get depressed with all the waiting game.

 Elaine

On 7/24/2007 Marcie77 wrote:

Dear All,

I have been fighting Pancreatic Cancer since August of 2000 when I was first diagnosed..I am now completely tumor free.  I have posted many emails here asking for help and receiving information.  For all of you still suffering, I will continue to share what information I have that might help someone.  Remember, I was diagnosed with a Non Functioning Islet Cell Carcinoma..I had whipple but the cancer had spread..I ended up with tumors from spine down to pelvis..including many in liver..I NEVER did chemo or radiation because as a nurse I researched heavily the effects of chemo for this particular cancer and could not find anything to support that chemo had any true advantage..My research did lead me to Dr. Thomas O'Dorisio at the University of Iowa..I saw him and had the treatment of INTERNAL IRRADIATION OF NEUROENDOCRINE TUMORS WITH YTTRIUM-90-DOTATOC, A RADIOLABELED SOMATOSTATIN ANALOGUE,

I know this treatment isn't for everyone, HOWEVER, it has taught me that there are effective cures for certain kinds of pancreatic cancers..

REMEMBER..

FIND OUT SPECIFICALLY WHAT KIND OF PANCREATIC CANCER YOU OR YOUR LOVE ONE HAS BEEN DIAGNOSED WITH.

FIND A SPECIALIST FOR YOUR SPECIFIC CANCER

SEEK MORE THAN ONE OPINION BEFORE EMBARKING ON ANY KIND OF TREATMENT

SEARCH THE MANY PANCREATIC MESSAGE BOARDS FOR PATIENTS HAVING YOUR SIMILIAR TYPE OF CANCER TO SEE WHAT KIND OF TREATMENTS ARE AVAILABLE AND WHERE THEY ARE BEING DONE.

ASK QUESTIONS!!!

Good luck to everyone!!

Marcie Ortiz, RN, BSN, MSM

 

 

 

Dear Marcie,

I've written twice (personal reply and posted reply)  in an attempt to dialogue with you about my same situation with non-functioning islet cell neuroendocrine carcinoma and meeting Dr. O'Dorisio in August to begin treatments after 10 years of hit and miss with other doctors. Others have posted questions following yours, but I don't see any replies.  Am I missing something?  I'd appreciate any help to begin dialogue, unless this is just to post and not to continue back and forth of Q and A.

It's frustrating because after 10 long years, I finally see information coming from others with exactly what I'm experiencing, and I cannot seem to enter into the conversation. I know it's not rocket science...

Appreciate any suggestions!

Thea