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Pancreatic Tumor Experience

Dbroncos

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Well not looking for sympathy but maybe someone with experience to pick their brain. Found out i got a good size tumor on my pancreas. Have had Biopsy done and they are unable to rule out cancer at this point. Oncologist has decided to go in and remove half of the pancreas and all of my spleen. If anyone has any experience with this i would like to maybe pick your brain and get some first hand ideas what i need to prepare for. Thanks
 

steamin rice

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My father in law started going through something similar in early 2020, successfully completing the whipple surgery followed by chemo and is recovering now. The whipple surgery and chemo was tough but he got through it and is recovering. Stay strong!
 

TPC

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Wife says she sees it and it usually works out fine. Your chances are really good.
Patients may eventually have to check their blood sugar and take insulin. Read that may as in maybe.
Everyone is different.
Better than cancer and you are lucky they now have this treatment.
 

HNL2LHC

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Sorry I do not have any experience but I do want to wish the best of luck to you as you start the process. Be sure that you get as much rest as you are able. Also be sure that your caregivers do the same. 👍
 

bbrownster

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Well not looking for sympathy but maybe someone with experience to pick their brain. Found out i got a good size tumor on my pancreas. Have had Biopsy done and they are unable to rule out cancer at this point. Oncologist has decided to go in and remove half of the pancreas and all of my spleen. If anyone has any experience with this i would like to maybe pick your brain and get some first hand ideas what i need to prepare for. Thanks

Recomend UC Irvine. You are likely a candidate for a whipple procedure. They are a center of excellence for whipples. My wife had a pancreatic tumor issue and through months of visits to different health providers, we were finally told about UCI. She had her whipple back in 2009 and is perfectly fine today. Good luck as this is no fun for you or your family.
 

BingerFang

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My mom had similar scenario back in 2015. Went to USC Keck Hospital on a Monday and had the spot on her pancreas removed. Everything went fantastic and she was released from the hospital that Friday. She died Sunday morning at the house from a pulmonary embolism.

I don’t share this to scare you but only to be careful. Have someone with you 24/7 that can drive you to the hospital if shit starts going south. We made the deadly mistake of calling 911.

RIP Mom
1621454874615.png
 
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havasuhusker

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I have no experience, but I wish you the best of luck!
 

Havasu blue label

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You got this be strong and ask questions at every docs appointments my buddy is in the thick of it past three months and looks good
 

BDMar

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First hand experience with this. Still fighting it.
If they did a biopsy how the hell do they not know definitively whether it's malignant or not? I would have to assume a tumor in the pancreas is cancerous. Get on it now! pancreatic cancer is fast growing and will spread rapidly.
 

HubbaHubbaLife

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I agree with BDMar post.... you've asked for data and facts so here goes. My best friends stomach did not feel well for a few months so came from Maui to Newport for an annual checkup. He was 52. They found a cancerous tumor just off the pancreas [see pic].... within two days they did Whipple surgery at Hoag/ Newport Beach removing tumor and also took several lymph nodes. [Important to note] At the time the oncologist was telling him due to young age and early detection prognosis of survival was very good. That was Oct 2019.... after surgery he returned to Maui and did 9 mths of chemo followed by radiology. He basically threw the kitchen sink at cancer. In summer of 2020 doctors announced he was cancer "free." Then a few months later 3 new small tumors off his liver were detected. They grew and spread rapidly and he succumbed in March 2021. This I understand is a brutal story but its important for you to hear right now. Hopefully you will have a different outcome and I want to help you by offering to put you in touch with his widow.... she learned an awful lot through this horrific experience.... if this tumor is cancerous you'll benefit from her knowledge. She's starting a foundation to support Pancreatic cancer cure. PM me if want her advocacy.... I was stunned at how abysmal the medical doctors, support staff & healthcare providers performed regarding communications. This is a wealthy family with platinum coverage. I won't give you just well wishes, you'll have all that stuff coming from those you know.... this will be advice & what to do in preparation should the worst occur. All my best!

1621453093004.png
 

MooreMoney

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I would be on the first flight to houston to get into MD Anderson. Have your doctor get you into the patient portal to get care at MD Anderson.
 

HubbaHubbaLife

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I would be on the first flight to houston to get into MD Anderson. Have your doctor get you into the patient portal to get care at MD Anderson.
I was blown away at all the people I met over last 2 years who had some sort of exposure or knowledge of Pancreatic cancer either through friends or family. My buddy said MD Anderson clinic in Houston has best cancer treatment reputation in USA.
 

Xtrmwakeboarder

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I was blown away at all the people I met over last 2 years who had some sort of exposure or knowledge of Pancreatic cancer either through friends or family. My buddy said MD Anderson clinic in Houston has best cancer treatment reputation in USA.
At my previous company, we had a phase 3 clinical trial at both MDA and UTSW, both top-notch.
 

HubbaHubbaLife

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Happy to PM anyone who wants my friends Clinical Trial experience.... I'm obviously still blowing off steam on the last 18 month experience witnessing my friends wife navigate & negotiate with medical professionals and healthcare providers. rant over... for now.
 

TPC

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I agree with BDMar post.... you've asked for data and facts so here goes. My best friends stomach did not feel well for a few months so came from Maui to Newport for an annual checkup. He was 52. They found a cancerous tumor just off the pancreas [see pic].... within two days they did Whipple surgery at Hoag/ Newport Beach removing tumor and also took several lymph nodes. [Important to note] At the time the oncologist was telling him due to young age and early detection prognosis of survival was very good. That was Oct 2019.... after surgery he returned to Maui and did 9 mths of chemo followed by radiology. He basically threw the kitchen sink at cancer. In summer of 2020 doctors announced he was cancer "free." Then a few months later 3 new small tumors off his liver were detected. They grew and spread rapidly and he succumbed in March 2021. This I understand is a brutal story but its important for you to hear right now. Hopefully you will have a different outcome and I want to help you by offering to put you in touch with his widow.... she learned an awful lot through this horrific experience.... if this tumor is cancerous you'll benefit from her knowledge. She's starting a foundation to support Pancreatic cancer cure. PM me if want her advocacy.... I was stunned at how abysmal the medical doctors, support staff & healthcare providers performed regarding communications. This is a wealthy family with platinum coverage. I won't give you just well wishes, you'll have all that stuff coming from those you know.... this will be advice & what to do in preparation should the worst occur. All my best!

View attachment 1004224

This is an asking for info thread so let me add this and hold this thought:
If accepted into a trial this is what I experienced:

I had dual premium insurance and both refused to cover the clinical trial meds and procedures for my cancer episode.

State law in Cali says they have to. Often, most the clinical trial meds and procedures costs are covered by the company testing their product/procedures. Then, what costs are left over,,, be you have PPO or HMO has to be picked up by your insurance. In California. Dunno about elsewhere.

Doesn't mean they do it willingly, you have to hold that knowledge and press them on this fact.

Cancer:
You start out with a single sheet of paper when you first take ill and when it's all over you have a 3" thick stack of paperwork or two 2" stacks. Print everything.
My Pancreatic tumor was blasted off with a trial drug that was simultaneously attacking my colon tumor and another chemo that carried off the tumor in a zillion pieces. Just an unexpected, side-effect bonus.

I wish you all the best. Keep us informed.
 
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HubbaHubbaLife

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This is an asking for info thread so let me add this and hold this thought:
If accepted into a trial this is what I experienced:

I had dual premium insurance and both refused to cover the clinical trial meds and procedures for my cancer episode.

State law in Cali says they have to. Often, most the clinical trial meds and procedures costs are covered by the company testing their product/procedures. Then, what costs are left over,,, be you have PPO or HMO has to be picked up by your insurance. In California. Dunno about elsewhere.

Doesn't mean they do it willingly, you have to hold that knowledge and press them on this fact.

Cancer:
You start out with a single sheet of paper when you first take ill and when it's all over you have a 3" thick stack of paperwork or two 2" stacks. Print everything.
My Pancreatic tumor was blasted off with a trial drug that was simultaneously attacking my colon tumor and another chemo that carried off the tumor in a zillion pieces. Just an unexpected, side-effect bonus.

I wish you all the best. Keep us informed.
Excellent post. Productive.
 

Jimmyv

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Not the exact same, but I’ll share some family history.

Father had Bile Duct cancer, though was originally miss-diagnosed as Pacreatic cancer. Stage 4 when found, and few options for treatment at the time (little more than 10 years ago). He went to City of Hope for treatment. At that time there was no option for a successful surgery, and no pre prescribed course of treatment. Additionally there were no clinical trials he qualified for. He was offered and did a chemo regiment before deciding he was done, and passing not long there after.

Not sure when the Whipple surgery first came to be, but that sounds like a good option. There are more options now for bile duct and pancreatic cancer than there were when my dad was diagnosed. City of Hope is one of the top cancer hospitals around, but of course, don’t be afraid to seek further opinions.

My mother is also a cancer survivor, almost 30 years, ovarian cancer, had a full hysterectomy - City of Hope

I am fighting Leukemia, currently in remission, just since last year after chemo, radiation and a bone marrow transplant - City of Hope. Was originally diagnosed at Pomona Hospital and the oncologist wanted to treat me there. I managed to get a consultation at City of Hope and they admitted me and had me in a bed getting my first round of chemo the same day.

Friend is 5 years remission, Leukemia, MD Anderson in Texas (one of the top cancer hospitals in th nation). His poor wife is 5 yrs of remission breast cancer and was just diagnosed with bone cancer.

Too many folks with first hand knowledge of cancer here. My advice is get in a good headspace and make the decision if you are going to fight. Then trust in your team of doctors. Be aggressive. Go for whatever offers you the best possible end result rather than options that may be deemed the least invasive.
Commit and be ready to fight, you can do it.

J
 

DaveH

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GF's mom just died if pancreatic cancer.

she lasted about 5 years after the diagnosis with fairly aggressive treatment. multiple surgeries, chemo, all that. her quality of life was decent given her age and the treatments up unitill the last few months.

after watching this.....you have to ask yourself......what is more important to you........few remaining years with decent quality of life, or trying to eek out a few more years going through aggressive treatments and the side effects that come with that.

i watched my next door neighbor in her 30's fight breast cancer for years until she was a walking pale skeleton, couldn't get out of bed and still die in the end.

tough decisions ahead.

very sorry for your diagnosis.
 

Jimmyv

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I watched my dad give treatment a go and give up. I respected his decision to do so. He was much older than I am and the family was all grown. He felt he’d had a full life and insisted everything after Vietnam was already a bonus.

My kids were 3 and 5 when I was diagnosed. They needed their dad and I wasn’t ready to go. In the midst of the really bad chemo I totally understood why people opt out. Its poison. It’s hard. It seems never ending. Hour by hour, day by day, week by week you’re sick and you continue to fight.

Somewhere I picked up the following advice, and it rung true for me,
Once you decide why you have to live, it no longer matters how you have to live.

I would put myself through anything to be here with my kids.

J
 

KevinR

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Heart wrenching to read of all these cancer real life stories. Breaks my heart.

My family has largely been blessed as cancer free. Dad and I have leukemia, but his is much more aggressive than mine. Nonetheless we are both on the downhill side with things pretty much in control as of this time. He’s in Havasu and had great treatment in Mayo Clinic in Phoenix. I’m in west LA and UCLA Oncology Center has taken care of me.

If anyone has questions about Mayo or UCLA give me a PM.

God bless you all.
 

chonchisyque

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Knowing what type of cell the pancreatic tumor is essential to your treatment. Here at uci we due two types of petscans for pancreatic ca. The majority of the time we due the regular (f18) FDG Isotope, to look for the cancer cells in your body. The other one is for Pancreatic Neuro Endocrine Tumors and we use Gallium 68 isotope to look for those tumors.
 
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