Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Marcie77 on Tue Oct 14, 2008 12:00 AM
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
by Serguei on Tue Oct 14, 2008 12:00 AM
by MtnSquid on Wed Oct 15, 2008 12:00 AM
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.
by elaine7 on Wed Oct 15, 2008 12:00 AM
by nanaroo on Fri Oct 17, 2008 12:00 AM
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.
by LJLINY on Sat Oct 18, 2008 12:00 AM
by Ruthward on Thu Oct 30, 2008 12:00 AM
by aussie123 on Sun Nov 16, 2008 12:00 AM
by stanbee on Wed Dec 31, 2008 12:00 AM
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
by ScottWA on Sat Feb 14, 2009 12:00 AM
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.
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