1. < Pancreatic Cancer

Celebrating Life after Pancreatic Cancer!

Posted by marvinjsturing @marvinjsturing, May 9, 2019

Today is May 9. Five years ago, on May 9, 2014, I was diagnosed with pancreatic cancer. Two days after my diagnosis, my wife and I went to church with our son. On that day the pastor preached a sermon on Romans 8:28. “And we know that all things work together for good to those who love God, to those who are called according to His purpose.” As we left church that morning, we did not know what the future held for us, but we were assured that God would be with us. Three weeks after preaching that sermon, the pastor's wife died of pancreatic cancer. When I told my boss that I had pancreatic cancer, he was concerned because his father died 6 months after being diagnosed with pancreatic cancer. My Whipple procedure was done on June 5, 2014. On that day, my brother-in-law was diagnosed with pancreatic cancer. He lived for another 20 months before the cancer took him. Two years ago, my cousin was diagnosed with pancreatic cancer. He died 10 days later. My grandpa died before I was born, but last year I found out that he died of heart failure a few days after having surgery for pancreatic cancer. When I was diagnosed, the 5-year survival rate was 5%. Now it is 9%. Today, by God's grace and because of the help I received from the doctors and nurses at Mayo, I am alive and celebrating life!

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

carrie40 | @carrie40 | 10 hours ago
In reply to @jymurawski "I was diagnosed with Pancreatic cancer on March 15, 2024. I was jaundiced and fatigued. The..." + (show)
@jymurawski

I was diagnosed with Pancreatic cancer on March 15, 2024. I was jaundiced and fatigued. The doctors performed surgery to put a stint in the bile duct and discovered a small tumor in the head of the pancreas.
I had 7 sessions of chemo, Whipple surgery, and 5 more rounds of chemo. Rang the bell and was ready to get back to a normal life.
Three months later, I had my first CT scan which showed the cancer returned with a vengeance. My CA 19-9 was in the thousands. I was told by my doctor if the chemo worked, I’d have no longer than a year to live. She dashed away all hope and optimism for a future. My family and I are devastated, sad, and angry.
It is so very difficult to dig our way out of this hole of despair and darkness to find joy but we must. I will not and cannot live with whatever time I have left in sorrow and pity. Even though this was the worst year of my life, it was also my best. I have been enveloped by an amazing support group of family and friends who have shown me so much love and compassion.
Having a death sentence is both good and bad. I can get legal things in order and help my love ones prepare for my passing. It’s the insidious things that hit me in the face. The realization I don’t need to renew my subscriptions, or wondering what will happen on my favorite shows, things so minor that seem so unfair. I’m angry I’ll be missing out on life that will go on without me.
When I fall back into my hole, I will come to this site to help me get through my grief. What I’m hoping to find are people who are going through the same emotions and experiences I’m going through. Misery does love company on this journey of life and death.

Jump to this post

Get a new doctor. There are so many survivors that I have read about with situations similar to yours. Please don't give up. I am reading a book now that presents attitude, exercise, meditation, and other helps that YOU have control over. (Ian Gawler, "You Can Conquer Cancer"). It has helped me immensely (peritoneal carcinomatosis), both with prolonging life and enjoying life. But I know how you feel--it has been 2 1/2 years since my diagnosis with pancreatic cancer (now metastasized), some chemo and the Whipple. I repeat to myself--"I am so fortunate to have a profound sense of wellbeing." I'm so glad you are appreciative of what you have--that will make a huge difference in your survival--please hope. Courage, Carrie

REPLY
1 reply
jymurawski | @jymurawski | 9 hours ago

Markymarkfl
I have been reading and rereading your message. It has affected me greatly. You lifted my spirits to know your journey and success in your own fight. I relate to your feelings of being at the mercy of CT scans and always waiting for the other shoe to drop. I am wishing for a good outcome on this and your upcoming treatments.Have fun using your event tickets. Thank you. I am forever grateful.

REPLY
jymurawski | @jymurawski | 9 hours ago
In reply to @carrie40 "Get a new doctor. There are so many survivors that I have read about with situations..." + (show)
@carrie40

Get a new doctor. There are so many survivors that I have read about with situations similar to yours. Please don't give up. I am reading a book now that presents attitude, exercise, meditation, and other helps that YOU have control over. (Ian Gawler, "You Can Conquer Cancer"). It has helped me immensely (peritoneal carcinomatosis), both with prolonging life and enjoying life. But I know how you feel--it has been 2 1/2 years since my diagnosis with pancreatic cancer (now metastasized), some chemo and the Whipple. I repeat to myself--"I am so fortunate to have a profound sense of wellbeing." I'm so glad you are appreciative of what you have--that will make a huge difference in your survival--please hope. Courage, Carrie

Jump to this post

Carrie, Thank you for the book recommendation . It’s on my list. We share the same diagnosis. I cannot tell you how grateful I am to find kindred spirits to commiserate and share feelings. Thanks for reaching out. I appreciate your support and advise.

REPLY
lvtexas | @lvtexas | 8 hours ago
In reply to @markymarkfl ""I was told by my doctor if the chemo worked, I’d have no longer than a..." + (show)
@markymarkfl

"I was told by my doctor if the chemo worked, I’d have no longer than a year to live. She dashed away all hope and optimism for a future. My family and I are devastated, sad, and angry."

Don't let that prognosis be your benchmark! My tumor also returned with a vengeance 4 months after Whipple, but then remained quite stable for 2 years on chemo.

It grew again with a vengeance during my 4-month break for a clinical trial, but stabilized again for another 6 months or so before my CA19-9 started climbing again. It seems to be a sign of drug resistance at this point, but I won't know for sure until the next ctDNA test and scans next month.

Your condition (and mine) obviously change a perspective and help put priorities in order, but don't define an actual endpoint. I was in pretty bad shape last October, but now have the time and energy to resume my search for better drugs and clinical trials, as well as buying tickets to some future events that I want to live long enough to attend. 🙂

I wish you all the best in finding joy and good treatment, as well as for tolerating your chemo.

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@markymarkfl What is your chemo type and frequency that you have been on for 2 years? I just started gemzar/abraxane and had to push the second infusion due to low blood counts.
I had folfirinox in 2022. So I may not be working with the same foundation as you. Thanks!

REPLY
1 reply
kathy74 | @kathy74 | 8 hours ago
In reply to @jymurawski "I was diagnosed with Pancreatic cancer on March 15, 2024. I was jaundiced and fatigued. The..." + (show)
@jymurawski

I was diagnosed with Pancreatic cancer on March 15, 2024. I was jaundiced and fatigued. The doctors performed surgery to put a stint in the bile duct and discovered a small tumor in the head of the pancreas.
I had 7 sessions of chemo, Whipple surgery, and 5 more rounds of chemo. Rang the bell and was ready to get back to a normal life.
Three months later, I had my first CT scan which showed the cancer returned with a vengeance. My CA 19-9 was in the thousands. I was told by my doctor if the chemo worked, I’d have no longer than a year to live. She dashed away all hope and optimism for a future. My family and I are devastated, sad, and angry.
It is so very difficult to dig our way out of this hole of despair and darkness to find joy but we must. I will not and cannot live with whatever time I have left in sorrow and pity. Even though this was the worst year of my life, it was also my best. I have been enveloped by an amazing support group of family and friends who have shown me so much love and compassion.
Having a death sentence is both good and bad. I can get legal things in order and help my love ones prepare for my passing. It’s the insidious things that hit me in the face. The realization I don’t need to renew my subscriptions, or wondering what will happen on my favorite shows, things so minor that seem so unfair. I’m angry I’ll be missing out on life that will go on without me.
When I fall back into my hole, I will come to this site to help me get through my grief. What I’m hoping to find are people who are going through the same emotions and experiences I’m going through. Misery does love company on this journey of life and death.

Jump to this post

Hi. I was first diagnosed in Sept. 2024. My tumor is in the tail and the body of the pancreas. It was. 7.2 cm long. The cancer is encased in the celiac axis which has hundreds of nerve endings. I am inoperable and have a limited time to live. After 2 scans the tumor has shrunk .67 inches. I am in palliative care and my next step is hospice. I was on 2 chemos. Gemzar and Abraxane. They stopped the Abraxane because I wasn't having a great quality of life. I had intense bone pain, flu like sympoms x 5. I was exhausted 4 days out of the week. I am now off the Abraxane for about a 5 weeks now. Right now I am tired at the end of day and sometimes I have a hard time trying to focus. I am considered a stage 4. My doctor told me that I will not survive this disease but will not tell me how long I have. I have come to terms with this but my husband feels I am going to survive this. I feel for you and I will pray for you. I am so sad for us both.

REPLY
markymarkfl | @markymarkfl | 4 hours ago
In reply to @lvtexas "@markymarkfl What is your chemo type and frequency that you have been on for 2 years?..." + (show)
@lvtexas

@markymarkfl What is your chemo type and frequency that you have been on for 2 years? I just started gemzar/abraxane and had to push the second infusion due to low blood counts.
I had folfirinox in 2022. So I may not be working with the same foundation as you. Thanks!

Jump to this post

I had 12 bi-weekly mFolfirinox over 6 months between Oct 2021 and May 2022, Whipple in June 2022.

Appeared to be NED from then until Oct 2022, with recurrence in surgical bed and a possible met in the abdomen.

I began biweekly Gemcitabine + Abraxane + Cisplatin in Jan 2023, continued until Apr 2024. We tried a slight reduction in Abraxane dose around Feb 2024, but saw an immediate increase in CA19-9 and restored the original, full dose, which brought the numbers down again.

Took a 4-month break (Apr 2024 - July 2024) for a clinical trial that failed.

Resumed biweekly G+A+C late July 2024. I've missed a few of the biweekly treatments or stretched them beyond the prescribed 14 day intervals due to hospitalization for other issues and family events, but am still going strong and getting another round tomorrow. CA19-9 is getting worse fast, so we might soon declare this regimen ineffective due to resistance.

CA19-9 fluctuated between 116 and 236 while on mFolfironox, trending upward over that time. CA19-9 peaked at 2315 after my clinical trial failure, and G+A+C brought it down to 60 from there at one point, so the GAC has been far more effective based on that criteria.

My blood counts have dropped on occasion on the GAC, but never enough to skip a chemo session. Most notable is hemoglobin and hematocrit, which tend to track each other. I've had hemoglobin hover just barely over 8.0 for quite a while, with drops as low as 6.7 last Christmas. I've had about 4 blood transfusions over the last few years to address that, but am not getting injections of Aranesp to bring it up; finally saw a 10.0 on that blood test today! Ideal range is above 13.2, but they don't aim for that because of the increased risk for blood clots.

REPLY
markymarkfl | @markymarkfl | 4 hours ago
In reply to @jymurawski "Thank you for your words of encouragement and support. Where have you gone to find clinical..." + (show)
@jymurawski

Thank you for your words of encouragement and support. Where have you gone to find clinical trials?

Jump to this post

My starting point to search for trials is usually https://clinicaltrials.gov/ but there are other good ones.

I often just check the websites of prominent institutions where I could realistically travel by car (on straight interstates with tolerable traffic) or easy, affordable non-stop flights. From Central Florida, the former are mainly Moffitt and Mayo, with the latter including Houston, Atlanta, Baltimore, NYC, and Boston.

My trial was at MD Anderson, requiring me to spend 5 weeks in Houston.

It's important to speak to a human at your target institution / trial location as soon as possible. They often ghost people who send emails or leave voicemail. It helps to be "in their system," which means you've actually seen an oncologist (at least for a one-time consultation or second opinion) at that site, so you'll have an advocate with inside connections willing to refer you to the actual research coordinators conducting the trial.

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