1. < Pancreatic Cancer

Pancreatic Cancer warriors I hope you get great news like me

Posted by thawk32 @thawk32, Apr 10, 2023

I’m feeling a lot better after confirming with my Oncologist yesterday about my MRI. It’s almost to good to be true that my cancerous cells have been reduced so much. My doctor confirmed what radiologist said that there was no discretely measurable mass identified.
I’ve been fighting Pancreatic cancer for two years and have done 42 treatments during this time. I’ll be continuing to have my treatments every two weeks and now know that they worth my time.

I will be having a CT scan on April 17th of my chest and abdomen to see if these areas are clean. At this time this is very encouraging and has my head in a different place from where it’s been for two long years.
I want to post to give all Pancreatic Cancer warriors the strength and knowledge that treatments work. I never thought I’d see theses results and had happy tears as it was surreal.
Sending prayers 🙏🏻 to all my Pancreatic Cancer Warriors. ❤️

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

stageivsurvivor | @stageivsurvivor | Apr 17, 2023
In reply to @tra418 "Could I ask the Whipple surgery patients their ages & if they were in great health..." + (show)
@tra418

Could I ask the Whipple surgery patients their ages & if they were in great health prior to surgery because I am so concerned about my husband's age & fragile condition from prior complications from ERCP's , twice sepsis , necrotizing pancreatitis, pneumonia etc...

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I was 55 in 2012 when diagnosed and had the Whipple procedure. I had been doing 50 mile bike rides at least twice a week for speed/endurance training so I was in excellent shape going into 9.5 hours of surgery that included a portal vein resection. Despite being in very good physical shape, it was still a slow, steady recovery that took nine months before I felt almost back to normal. My surgery went smoothly No concerning complications. The stomach/GI tract took extra days to wake up before I could start on solid food. I had a small bacterial abscess in a small area of the incision and was put on IV antibiotics to clear it and heal in a little over 2 weeks.

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1 reply
patel | @patel | Apr 17, 2023

Addendum:Does anyone have gene mutations or are enrolled in any studies

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2 replies
mjennison | @mjennison | Apr 17, 2023
In reply to @tra418 "Could I ask the Whipple surgery patients their ages & if they were in great health..." + (show)
@tra418

Could I ask the Whipple surgery patients their ages & if they were in great health prior to surgery because I am so concerned about my husband's age & fragile condition from prior complications from ERCP's , twice sepsis , necrotizing pancreatitis, pneumonia etc...

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Hello @tra418 . My husband is 67. His health is good with high blood pressure and overweight being his main concerns. He had quite a lot done in the 6 months leading up to his surgery such ECRP surgery, laparoscopic surgery and 8 rounds of chemo. I hope this helps. Sending positive vibes and prayers to you and your husband.

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1 reply
gamaryanne | @gamaryanne | Apr 17, 2023
In reply to @stageivsurvivor "FOLFIRINOX is a first-line regimen of 4 components. FOL = Folinic Acid which is a reduced..." + (show)
@stageivsurvivor

FOLFIRINOX is a first-line regimen of 4 components.
FOL = Folinic Acid which is a reduced form of the vitamin folic acid and the brand name is Leucovorin calcium.
F = 5-Fluorouricil. It is the most toxic of the agents and infused slowly over 46 hours.
IRIN= Irinotecan which affects fast growing cells in the GI tract and causes diarrhea. The brand name is Camptosar.
OX =Oxaliplatin also known as Eloxatin. It is neurotoxic to peripheral nerves, e.g., hands, fingers, feet and toes.

Some oncologists May dose their patients of six cycles followed by just 5-FU and Leucovorin. The irinotecan and oxaliplatin are removed for the next six cycles. This is to give the body a rest and recover. I was dosed using this alternate method which reduced the neuropathy and the symptoms I did have from 24 cycles of Folfirinox and eventually resolved after a number of years. The alternate cycles of 5-FU/Leucovorin totaled 22 making for a combined total of 46. End result of the additional chemo beyond the standard of care 12 cycles was NED. Minimal residual disease (MRD) was destroyed. What remained of the significantly shrunken tumors was scar tissue which eventually was cleared from the liver by immune system cells.

At 10 years I was told by several oncologists I achieved cure but to remain vigilant and continue scans as those with a remaining pancreas have a propensity to develop a new primary tumor. When you hear of patients that developed pancreatic cancer again after seven years of more, that is from a new primary tumor. I know of two individuals that after reaching five years, stopped with surveillance. Both at 10 years from initial diagnosis and Whipple surgery developed new primary tumors in the remaining pancreas and succumbed to it. This is why I continue getting MRI’s twice a year and ctDNA which is extremely sensitive and eliminates radiation from a CT.

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Can you explain what ctDNA is? I am awaiting results from the blood test Signatere and aware it could provide a false positive.(not proven for pancreas cancer yet) If it provides a positive, I need to make a decision on what next, even though I am NED now.

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gamaryanne | @gamaryanne | Apr 17, 2023
In reply to @patel "Addendum:Does anyone have gene mutations or are enrolled in any studies" + (show)
@patel

Addendum:Does anyone have gene mutations or are enrolled in any studies

Jump to this post

I am enrolled in Signatere test which is appropriate only when you are pronounced NED.
It is a blood test being used for other cancers that can detect the DNA of your cancer type in the bloodstream prior to tumors forming.

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gamaryanne | @gamaryanne | Apr 17, 2023

I am there with you! I cried every time my tumor marker release showed a decline. Last marker was at 55 and if it drops again I’ll be crying tears of joy and such relief.

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thawk32 | @thawk32 | Apr 17, 2023
In reply to @patel "Thank you for this great and encouraging discussion. The statistics presented to a new person with..." + (show)
@patel

Thank you for this great and encouraging discussion. The statistics presented to a new person with stage 4 pancreatic cancer are so grim that we really need more discussions like this to keep us encouraged. I really appreciate you all and feel like as I start on this journey that I have a chance at life as I endure all the difficulties of this intense chemotherapy regimen! Thank you Thank you Thank you!

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I was diagnosed with stage four pancreatic cancer, two years ago. The news was almost surreal as pancreatic cancer is a tough cancer to fight. Today I will be getting a CT scan of the abdomen and lungs. See if they’re clear.
.

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ncteacher | @ncteacher | Apr 17, 2023
In reply to @patel "Addendum:Does anyone have gene mutations or are enrolled in any studies" + (show)
@patel

Addendum:Does anyone have gene mutations or are enrolled in any studies

Jump to this post

I was identified with the ATM gene mutation. I had ovarian cancer in 2007 and DCIS (stage 0) breast cancer in November, and those together prompted the genetic testing. I was undergoing baseline testing to set up a screening regimen for pancreatic in March when the tumor marker blood tests discovered I already have it; I'm just not very symptomatic yet. I was told there aren't any current trials involving the ATM mutation. We have initiated next-gen sequencing of the tumor tissue's DNA to determine the best chemo regimen; meanwhile, we'll start chemo with modified Folfirinox. There is a website that lists clinical trials, but I would probably just ask Dr. Google (haha) to search for clinical trials involving your specific genetic finding. That said, I was told I qualify for a number of supportive clinical trials, and so far I agreed to one, which is looking to see whether people with specific genetic markers have more or less trouble with GI upsets during chemo.

I agree--dealing with this diagnosis is a roller coaster. It is difficult to find positives in the middle of all the horror and negative findings. I am so glad to have found this message board (I"m not a Mayo patient) because I think it will really help boost my spirits.

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tra418 | @tra418 | Apr 17, 2023
In reply to @mjennison "Hello @tra418 . My husband is 67. His health is good with high blood pressure and..." + (show)
@mjennison

Hello @tra418 . My husband is 67. His health is good with high blood pressure and overweight being his main concerns. He had quite a lot done in the 6 months leading up to his surgery such ECRP surgery, laparoscopic surgery and 8 rounds of chemo. I hope this helps. Sending positive vibes and prayers to you and your husband.

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Yes thank you .Same to you both.♥️🙏

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tra418 | @tra418 | Apr 17, 2023
In reply to @stageivsurvivor "I was 55 in 2012 when diagnosed and had the Whipple procedure. I had been doing..." + (show)
@stageivsurvivor

I was 55 in 2012 when diagnosed and had the Whipple procedure. I had been doing 50 mile bike rides at least twice a week for speed/endurance training so I was in excellent shape going into 9.5 hours of surgery that included a portal vein resection. Despite being in very good physical shape, it was still a slow, steady recovery that took nine months before I felt almost back to normal. My surgery went smoothly No concerning complications. The stomach/GI tract took extra days to wake up before I could start on solid food. I had a small bacterial abscess in a small area of the incision and was put on IV antibiotics to clear it and heal in a little over 2 weeks.

Jump to this post

Thank you so much ,he is currently going to PT to get stronger after all his complications.He is 75 and no longer in great shape like he was .♥️🙏

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