This is a tough question but I just wonder: pancreas cancer?

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RE: This is a tough question but I just wonder: pancreas cancer?

by beingcelestial on Fri Oct 10, 2014 03:45 AM

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hi annie, do you know what kind of pancreatic cancer? there is one called PNET or pancreatic neuroendocrine tumor, specifically, a type of carcinoid cancer that is treated very differently than other cancers. to learn more about it, i suggest you go on the www.carcinoid.org site and the www.ACOR.org carcinoid listser (email group). prayers sent!

RE: This is a tough question but I just wonder: pancreas cancer?

by Hoomana on Fri Oct 10, 2014 05:58 AM

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No I don't know anything except what I have posted. I think at this point everyone is confused. I am not sure when we will get a Handle on any of this because it is changing daily. Surgery / no surgery/ chemo? No surgery. I am the youngest of six trying to piece all the bs together. No idea really,! Shoots.....

RE: This is a tough question but I just wonder: pancreas cancer?

by Hoomana on Fri Oct 10, 2014 06:01 AM

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I stumbled on this site and I am learning so when someone says something it is a little Familiar. I am a photographer . I know nothing!

RE: This is a tough question but I just wonder: pancreas cancer?

by maxxschiken on Fri Oct 10, 2014 11:17 AM

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On Oct 09, 2014 5:19 AM Hoomana wrote:

Thanks everyone for your awesome insprinational responses. My brother got a great report this morning from the hospital saying his tumor is not the bad cancer but the good or better cancer and they could probably operate in a few weeks. THEN he goes into the hospital for a meeting about chemo, and it turns out they did two biopsy. One came back as the good cancer that was the tumor, his tumor is large and at the head. The second biopsy was tissue around the pancreas or something and that result will be in tomorrow. How confusing! I am the youngest of six and our family is huge with amazing faith and a ton of support. That alone is the blessing in it's self. We are at early stages as far as information. My brother is still walking five miles a day and playing golf. He is changing diet and stuff but we are all still numb from all the news. We live in Kauai Hi, so recover and chemo will be good as the weather is amazing and it is so beautiful, you could spend more time outside enjoying nature. HIs doctor is at city of Hope. this is our second Oncologist. the first was down south. I pray for all of you so much. I pray for my brother and I hope one day he can join this page and help others. I will keep you posted!

Hope your brother gets better!  I spent lots of summers in Hanamaulu growing up.  My aunt worked at Sharon Sue downtown in the late 50's and 60's and my uncle worked at the golf course.  I used to eat at Saimen Sam's a lot and oh, the box lunch back then.....nothing compared to the junk you find here on the West Coast at these "wanna be" hawaiian fast food joints!  I literally hate those places.....  I miss Kauai ... I miss Hawaii...

RE: This is a tough question but I just wonder: pancreas cancer?

by beingcelestial on Fri Oct 10, 2014 12:17 PM

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that's great news, annie! i suggest that your brother obtain copies of all reports of tests. these include pathology reports, scans, blood work, surgicaloperative, even office visit progress reports. store everything in a binder with clear plastic protectors. do research to learn about follow-up care and what works best for his cancer. no cancer is good. some is easier to fight, more treatable and cure, but no cancer is good. everyone should be their own best advocate. unfortunately for us some doctors do not know all that they want us to think they know. i lost a friend to carcinoid because the doctor did not know how to treat it properly. i had a carcinoid and thyroid cancer. i hear this all the time...good cancer. the only good that comes from it is that i meet incrediblly caring people in these groups and that i can offer some good from my experiences and the knowledge i attained to help others. faith, hope, love...prayers for everyone. peace and prayers:)

RE: This is a tough question but I just wonder: pancreas cancer?

by hbradar on Fri Oct 10, 2014 08:21 PM

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On Oct 07, 2014 7:42 AM Hoomana wrote:

My brother has been diagonosed with PC the tumor is on the head of the Pancreas and is to large to operate. It has not spread to any other organs thus far. He is in Los Angeles going to the City of hope. He too will start on Folfirinox, I believe. He is strong and pretty young. Like a lot of guys he is started off pretty healthy when this thing crept up. I try not to read too much on the Internet and I believe only God knows how much time a person has. I also believe that they will shrink this thing and then be able to do his surgery . My deal is I want to be here for him he is one of my best friends and I would do anything for him. My question to anyone out there that is listening is : if you could do it over, and we're in his shoes what would you change or not change to give you the best odds possible. Only you guys can answer this question. So please reflect and answer my question if possible. Much Aloha, Annie

I believe the best thing one can do is choose the surgeon based on his experience.  The number of these surgeries perfomed matters greatly in the outcome.  The hospital seclection is similar. You want experienced people and then your in their hands.  That's about the only input you have. Some of the places to get this is usually a major hospital.  John Hopkins, Anderson, Mayo, Massachussets General, Sloan Kettering.  Depends where he lives. Any of the above perform many operations yearly. The operation he will need is most likely the Whipple.  Any other questions, let me know.   Also there is a facebook group for Pancreatic Cancer, that can be very helpful to the patient and the caregiver:https://www.facebook.com/groups/250497878309541/......Good luck to you and your brother - Howard

RE: This is a tough question but I just wonder: pancreas cancer?

by mundy on Sat Oct 11, 2014 03:50 AM

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Hi Howard,

that link appears to be broken.

rgds Mundy

RE: This is a tough question but I just wonder: pancreas cancer?

by hbradar on Sat Oct 11, 2014 05:14 AM

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On Oct 11, 2014 3:50 AM mundy wrote:

Hi Howard,

that link appears to be broken.

rgds Mundy

this should work

https://www.facebook.com/groups/250497878309541/

RE: This is a tough question but I just wonder: pancreas cancer?

by Whippleschmiple on Sat Oct 11, 2014 01:03 PM

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Time to treatment needs to be very quick while seeking other views but after hearing other stories after my own experience with related cancer ( my support group was for pancreatic and biliary cancers) some patients had neo adjuvant treatment ( goal was before possible surgery) and had large responses, had surgery,... Others on this site sometimes had responses enough for surgery. I am not thinking false hope but wondering 1. Is the hospital a NCI center 2. What drugs And, or radiation is used for neoadjuvant 3. If that hospital does neoadjuvant what would they do differently. Hes young enough that more aggressive may increase odds. I would also consider diet changes and exercising if he can. I gave up meat, dairy, found coconut milk products easy to digest. ..also almond milks... I read anticancer diet by dr. Servan schreiber.  I dded foods thought anticancer qualities and read some cancers had lower recurrences with exercise. I added mushroom extracts as lecture at my hospital spoke of some in use with chemo trials with pancreatic. Make many calls fast. I was "young" at 53 for ampullary cancer that some label pancreatic others label biliary. I was a surgical candidate but it was aggressive with high risk features. I called, emailed,  got two top opinions fast and did most aggressive option. Ideally if it is one tumor neoadjuvant protocol be best bet but these cancer move very quick 

RE: This is a tough question but I just wonder: pancreas cancer?

by redbiker on Sat Oct 11, 2014 03:16 PM

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Last friday we suddenly lost Peter after 7 grueling months. he was such an awesome person.  he rode a hundred miles on his bike just days before diagnosis. I'm still in shock and have been meaning to write down what I have learned from this.  here's my rough overview:

1. there is no chance that the tumor has not been sending out cancer stem cells for quite some time.

2. the horrible surgery reduces the flood of cancer stem cells, but they are already all over the place at this stage.  They can't see anything that is smaller than 3mm - which is already a mass of many hundreds of cells.  These cannot be seen from the outside by any kind of scan.  His immune system is fighting to keep them at bay.

3. pc is even worse because new mutations continue to be generated - so no single chemo is likely to reduce all of the types.  researchers are trying to identify which chemo combinations have a better chance against your specific mutations, but in advanced pc there are likely to be many types inside of the tumor.

4. cancer stem cells are generally resistant to chemo.  this is the main reason the long term looks so ugly.  even a single cell left behind after chemo will start the whole process up again.

5. the side effects of chemo can be just as deadly as the cancer.  pay attention to side effects.  infections, fevers, neuropathy, sodium imbalance, intestinal blockages... anticipate them and be ready.

SO WHAT DO WE DO???

1. IMMEDIATELY have a second opinion from an interventional radiologist regarding some form of ablation - IRE especially - the tumor is currently threatening major veins/arteries/nerve bundles.  If nothing else, it may improve his quality of life and may spare him some of the visceral pain and allow him to consider other trials.  It may allow ducts to function and not be collapsed.  It may reduce the ongoing flood of metastatic cancer stem cells.  You may soon have no options to do this - things can start sliding very fast.

2. you have nothing to loseby immediately jumping into the juicing/supplement/alternative options.  this is something Peter only did half-heartedly.  He was on the opposite coast. I wish sincerely that I could have been nearby and helped him with this.  It is a lot of work.  Especially focus on ones that minimize the chemo side effects, such as the strong antioxidants, vitamin D, omega3 oils, etc.  It's a quality of life issue as well as in the category of FIGHT LIKE HELL.

3. At least start with addressing the issue of the metastases as well as the primary tumor: curcumin (enhanced uptake ones like Longvida) and sulforaphane (brassica active ingredient).  these have very low to no toxicity and are in numerous clinical trials worldwide.  Other people have posted very thorough overviews.  remember chemo reduces uptake, so oral dosing has to be spread out over many times per day, rather than just once or twice.

4. Every patient needs an advocate.  Be assertive when things don't seem right. Challenge the medical community and make sure they pay attention.

5. Try to get into any clinical trial dealing with immunology - it's not perfect yet either, but this strategy won the 2013 AAAS scientific breakthrough of the year for a reason.

It is good you are nearby.  My regret is not flying to Peter the minute he was diagnosed.

What I received from this experience, painful and horrible as it was, was to have been motivated to read everything scientific, medical, conventional, alternative, that I could find for him.  I hope to be able to apply this to benefit my own life, the lives of my surrounding people and our larger community.  38,000 families like ours will go through this nightmare this year and not make it. I will do anything I can to help anyone in this situation.  Every year brings more promise for a cure - try everything you can in the meantime!

your 'ohana

Carolyn (in Carpinteria)

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