Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Diagnosed in December 2019. Had scans and pet mri done at Mayo in Rochester. Currently undergoing folfirinox regimen back home. Will return to Mayo in April to get scanned. Dr. Truly seemed to think I was a good candidate for the Whipple. Nothing had metastasized so far.

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@marvinjsturing

I am sitting here at Gonda 10 South at Mayo in Rochester. Had a PET/MRI done yesterday. This morning I was told that the test shows that after about 6 years my pancreatic cancer has come back. Waiting to meet with a surgeon to see what the next steps are. This puts any hopes for a kidney transplant on hold.

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Results from the biopsy have come in. My pancreatic cancer has come back. Now I need to meet wit a radiologist to set up a treatment plan.

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Hi. My father was diagnosed with Stage III pancreatic cancer at the end of January. He was told by local doctors that his tumor is inoperable because it is around a major artery. He has been recommended to start chemo to see if tumor will shrink. He currently lives in Charlotte,NC. I would like to get a second opinion. What are the steps I need to take to get a second opinion from Mayo. Thank you in advance for your advice.

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@mpatel23

Hi. My father was diagnosed with Stage III pancreatic cancer at the end of January. He was told by local doctors that his tumor is inoperable because it is around a major artery. He has been recommended to start chemo to see if tumor will shrink. He currently lives in Charlotte,NC. I would like to get a second opinion. What are the steps I need to take to get a second opinion from Mayo. Thank you in advance for your advice.

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@marvinjsturing, I'll be interested to hear what the radiologist has to offer.

Welcome to Mayo Clinic Connect, @alkat and @mpatel23. @alkat, you can get call Mayo Clinic to get a second opinion. Here is the contact information for all 3 locations http://mayocl.in/1mtmR63 Mayo in Jacksonville, Florida may be you most convenient location. @alkat and Marvin can tell you about their experiences with Mayo Clinic in Rochester, MN.

Alkat, I hope you are eligible for the Whipple procedure. You can find out more about it in these discussions:
– Pancreatic cancer—Whipple procedure https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
– Whipple procedure and follow up chemo https://connect.mayoclinic.org/discussion/whipple-procedure-and-follow-up-chemo/

MPatel, Marvin's tumor is also inoperable due to the wrapping of arteries. It is hard news to get. You may be interested in this discussion:
– Inoperable Pancreatic Cancer: What treatment options are there? https://connect.mayoclinic.org/discussion/pancreatic-cancer-3/

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@colleenyoung

@marvinjsturing, I'll be interested to hear what the radiologist has to offer.

Welcome to Mayo Clinic Connect, @alkat and @mpatel23. @alkat, you can get call Mayo Clinic to get a second opinion. Here is the contact information for all 3 locations http://mayocl.in/1mtmR63 Mayo in Jacksonville, Florida may be you most convenient location. @alkat and Marvin can tell you about their experiences with Mayo Clinic in Rochester, MN.

Alkat, I hope you are eligible for the Whipple procedure. You can find out more about it in these discussions:
– Pancreatic cancer—Whipple procedure https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
– Whipple procedure and follow up chemo https://connect.mayoclinic.org/discussion/whipple-procedure-and-follow-up-chemo/

MPatel, Marvin's tumor is also inoperable due to the wrapping of arteries. It is hard news to get. You may be interested in this discussion:
– Inoperable Pancreatic Cancer: What treatment options are there? https://connect.mayoclinic.org/discussion/pancreatic-cancer-3/

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@colleenyoung I also am waiting to hear what the radiologist will day. Will let you know when I find something out.

@mpatel23 Yes I was told my tumor is inoperable. The difference is that I was first diagnosed with pancreatic cancer in 2014 and had my Whipple at that time. Now 6 years later, my cancer has come back. My tumor this time is inoperable. I strongly recommend that your father get a second opinion at Mayo. Doctors there have made significant improvements in treating this cancer in the last few years. It will be well worth your time to have your father seen by the surgeons there.

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@mpatel23

Hi. My father was diagnosed with Stage III pancreatic cancer at the end of January. He was told by local doctors that his tumor is inoperable because it is around a major artery. He has been recommended to start chemo to see if tumor will shrink. He currently lives in Charlotte,NC. I would like to get a second opinion. What are the steps I need to take to get a second opinion from Mayo. Thank you in advance for your advice.

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His local doctors might be correct, but if I had accepted my local doctors similar prognosis I would not be writing this. My tumor also was wrapped (slightly less than halfway) around an artery. Sometimes, as in my case, the local surgeons say it is inoperable because they do not have the skill, training or staff to perform the operation. I searched the internet for answers and found Mayo illustrated on their web site how an "arterial resection" was sometimes performed on tumors located on arteries. I went to Jacksonville for a second opinion and was advised my tumor was in fact operable by either of two surgeons there who perform this type surgery. I received five chemo treatments of Gemzar (gemcitabine) and Abraxane prior to surgery. Upon having an MRI done a day before surgery it was discovered that the tumor had almost miraculously broken up and arterial resection was not necessary. The Whipple was performed as scheduled and I was out of the clinic hospital unit in six days. The point is , however that the surgeon was capable of and originally planned to do an arterial resection. The local Oncologists and surgeon did not inform me that there were surgeons elsewhere who do in fact have the skill and facilities to perform arterial resections in some cases. I am currently three weeks from being a two year survivor.
If at all possible, I would strongly urge that your father get a second opinion at a renowned clinic such as Mayo. It is a very simple procedure. You do not have to have a doctor referral at Mayo. You are treated like family at Mayo, not just a statistic. Sorry for the length of this post, but I cannot over-emphasize the importance of having a second opinion from a qualified specialist in something that is this life-threatening.

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I agree 100%. My husband would not be here today if it wasn’t for our second opinion at Mayo in Rochester!!

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@marvinjsturing

Results from the biopsy have come in. My pancreatic cancer has come back. Now I need to meet wit a radiologist to set up a treatment plan.

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I hope your radiologist appointment brings you some helpful news, @marvinjsturing. I look forward to hearing from you after you get your plan of treatment.

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Hello, I somehow missed the initial introductions. I was diagnosed with Pancreatic Cancer 3/1/2018 and have had a miraculous recovery and outcome. It's easier to share my story on the Mayo blog than restate the details. I believe focusing on one day at a time, staying positive, trusting my faith and walking through the steps recommended by my surgeon caused me to have my miraculous outcome of being cancer-free. Here is my story on the Sharing Mayo Blog: https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

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I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

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@marvinjsturing

I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

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I’ve so appreciated your posts and wish you the very best possible outcomes.

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@marvinjsturing

I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

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Keep the faith. One day at a time. I will be praying.

Liked by marvinjsturing

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@marvinjsturing

I just received a call from my radiologist. My treatments start tomorrow (Thursday, March 19). I will be receiving radiation 5 days a week. They currently have me scheduled for 28 treatments (through April 22). I am praying for as little damage as possible to the intestines and the kidneys. If there is too much damage to the kidneys, I may have to start dialysis.  I am also praying that I will be able to handle the side effects of radiation (fatigue, skin irritation, nausea and diarrhea). Typically, they give an oral version of folfirinox to make the radiation more effective. Because of my kidney problems, I can't have the chemo.

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My husband had the same treatment, finished about two weeks ago. He also had kidney issues so couldn't take the chemo pill, but they did have him do the chemo drug through a pump he wore every day for the three weeks. Apparently this is less stress on the kidney than the chemo pills are. Good luck to you!

Liked by marvinjsturing

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@fassbinder

My husband had the same treatment, finished about two weeks ago. He also had kidney issues so couldn't take the chemo pill, but they did have him do the chemo drug through a pump he wore every day for the three weeks. Apparently this is less stress on the kidney than the chemo pills are. Good luck to you!

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@fassbinder Was your husband on dialysis already? I am not (yet). Doctors told me if I was on dialysis it would be possible to get chemo.

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Can i ask a question, I have developed Cronic pacreatictis due to atrophy of my pancreas believed to be related my alpha 1 difficiency an autoamune difficiency. My pancreas appears to be no longer producing the insulin needed to support my diabetic needs ( 20+yrs ) diabetic. I'm sorry but my question is has anyone developed pancreatic cancer as result of pancreatic atrophy with resulted in Cronic pacreatictis. Thank you for you support Allie.

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