Pancreatic Cancer, Islet Cell/Neuroendocrine Tumors of Pancreas

Hello to everyone..

Its been quite some time since I have posted..but wanted to let everyone know, that it has been 18 months since I have had treatment for Non Functioning Islet Cell Carcinoma of Pancreas and I'm doing GREAT..All liver lesions remain gone, all Bone Mets are stable/no new growths..I am taking absolutely NO MEDICINE..back working part-time..Please get in touch with me if you have any questions..would love to hear from anyone else, post whipple or treatment for this type of Pancreatic Cancer..

Marcie Reber, RN, BSN, MSM

That's great news, Marcie! I saw your previous posts in the past and I was wondering how you were doing. Congrats!

Great news Marcie.....we'll still pray for your continued good recovery.

My wife and I are new to all this. In mid-September, my wife went into the hospital for a blocked liver duct causing her to turn jaundice. After they inserted a stint, the bile just was not flowing as well as they thought/anticipated, so they went in again endoscopically and found a 21 x 24 mm mass at the base of the pancreas....biopsy showed cancer but no cancer in the local lymph nodes in the area.

The tumor is fully resectable and will be followed up by chemo for an unknown length of time after surgery....no radiation needed and no treatment of the tumor needed before surgery.

I guess my wife might be one of the few lucky ones as the doctors have indicated a full recovery for my wife....the cancer has not spread anywhere beyond its own mass and I think her luck in early detection as a result of the liver duct blockage might have saved her life. We were so scared because pancreatic cancer patients in general are not given much hope for living beyond a few months or so....I'm glad you seem to be beating the odds Marcie....and I pray that my wife joins with you in continuing to beat the odds and that you both live long and prosperous lives.

 

 

hi marcie  great news.  my husband was diagnosed with neuroendocrine cancer in 12/05  he had tumors on his liver, pancreas and one blocking the spleen, which caused it to be very enlarged.  we were told no treatment as this cancer did not respond to regular cancer treatment.  we were truly blessed that a surgeon at duke saw jerry's case and called us to ask us to come see him, he thought he could help jerry.  in march of 06 jerry had  a whipple with the removal of his slpeen, about 1/3 of his pancreas and leaving only enough liver in hopes that it would be enough.  we spent around 80 days at duke, mostly dealing with infections and he was a very sick man.  they could not get all the cancer because it was seeded but they got all the tumors.  he is not able to work and sometimes has a lot of pain but i think some of the pain may be from scar tissue because he was literally split in half and tubes everywhere including out of his back.  he kept an abcess on pancreas for long time.  i learned quite a bit about caretaking because duke is a hospital that believes recovery at home is best.  he is able to do things outdoors and rides his tractor on farm and feeds livestock.  he does not have the stamina to work at his job for 8 hours.  we are blessed and so far no tumors have started .  back and the hope is that he may have a few good years.  i am so pleased to hear that you are doing good.  will keep you in prayers .

 

On 10/14/2008 Marcie77 wrote:

Hello to everyone..

Its been quite some time since I have posted..but wanted to let everyone know, that it has been 18 months since I have had treatment for Non Functioning Islet Cell Carcinoma of Pancreas and I'm doing GREAT..All liver lesions remain gone, all Bone Mets are stable/no new growths..I am taking absolutely NO MEDICINE..back working part-time..Please get in touch with me if you have any questions..would love to hear from anyone else, post whipple or treatment for this type of Pancreatic Cancer..

Marcie Reber, RN, BSN, MSM

 

Hi Marcie - I am a 63 year old woman with a neuroendocrine tumor at the head of the pancreas that was diagnosed last Thanksgiving.  I live in Portland, OR but went to Virginia Mason in Seattle for treatment.  Here in PDX the docs wanted to treat it like the ordinary type which doesn't work for this type.  I just got back from Seattle for my 5th embolization.  Don't know if you are aware of this - an interventional radiologist goes up the femeral artery to the vessels feeding the tumor and fills them with a compound that is basically poppyseed oil.  This starves the tumor.  The tumor has shrunk over 30% at this point and should show more shrinkage with this latest treatment.

 You didn't say what type of treatment you had - I would be interested.  I've not corresponded with anyone with this type of tumor and would be interested in what you have to say.  So far I have no complaints- a week of pain afterward and another week of fatique and then I go back to my regular schedule.

Hello.  My mom has the same diagnosis.  NET Pancreatic Tumor that has metasticized in the liver (islet cells).  She was in a tremendous amount of pain, but now is on a morphine patch.  She just started chemo (carboplatin and taxol).  She doesn't feel pain with the patch, but has nausea and vomitting.  Anyone have any success with this treatment?  Has anyone used these drugs?  What side effects did you experience?  I understand that it's different for everyone, but I need a reference point.  Thank you.

Hi:  I am also being treated for islet cell cancer at Virginia Mason in Seattle.  I am also wondering what treatment Marcie had that stopped her tumors for so long.  I have never heard of tumors stopping for that long.  I had surgery.  Then I was free for a year.  Then I took chemo for a year.  And then I was free for a year.  I am interested in what you thought of chemoembolization and how often you have to do it.  Also, can you stand the pain?  Why can't they control the pain?  Sue

On 10/14/2008 Marcie77 wrote:

Hello to everyone..

Its been quite some time since I have posted..but wanted to let everyone know, that it has been 18 months since I have had treatment for Non Functioning Islet Cell Carcinoma of Pancreas and I'm doing GREAT..All liver lesions remain gone, all Bone Mets are stable/no new growths..I am taking absolutely NO MEDICINE..back working part-time..Please get in touch with me if you have any questions..would love to hear from anyone else, post whipple or treatment for this type of Pancreatic Cancer..

Marcie Reber, RN, BSN, MSM

Hi Marcia77 I am really glad to hear you are doing so well. I am a 38 year old mother of 2 (7 yr old boy and 4 yr old girl). 18 months ago I was diagnosed with non functioning islet cell carcinoma in the pancreas. I had a subtotal pancreatectomy, and was told I was cured. A year later they found I had liver mets so I had a liver resection, where they removed 11 tumours. On my six monthly check up they found that I had 7 more tumours. I am about to undergo radiation therapy to shrink the tumours and possibly have them resected again. I am having a treatment called Octreotide. I was wondering if you have heard of it or if anyone else has had it. I would appreciate any input. Thanks Erin

So happy to hear about your results.

I've had islet cell cancer of the pancreas and liver since 1995.  Grows slowly. My quality if life is good. The liver is not yet badly damaged, although the kidneys are  somewhat damaged by the chemo.

 

Would be interested to hear what "treatrment" worked for you.

I have taken all the drugs. Temodar and Xeloda(bothoral), 5FU, Streptozotcin, Doxyrubicin.

  Gemzar, an experiment,may have recently made the liver tumors stable. But the Doc isn't sure whether it's the medicine or just a stage the tumor is going through.  Isletr cell is rare.  The docs aren't sure what to expect from it.

There's one trial remaining for me to go on but it will be hard on the kidneys, so I'd like an alternate treatment.  Please get back with me.

 

The happiest of New Years to you, Stan Berkowitz, SF

Marcie,

I would also be interested to know what treatment you received.  I was dx in 8/08, and received a Whipple and portal vein resection in 11/08.  I have mets to the liver and to two lymph nodes; the lymph nodes were removed in the Whipple.  I am also at Virginia Mason.  I am currently on chemo (streptozocin and 5FU) and am cautiously pessimistic on whether I will be a surgical candidate for the liver mets.

Thank you for any information you can provide.