1. < Pancreatic Cancer
Moderator

Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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?

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

sonomaga | @sonomaga | 4 days ago

I am a 92 yr. Old woman and was diagnosed with Stage 4 pancreatic cancer 4 months ago, with a prognosis of 6 months to a year left. I chose not to have chemo because of my age. I do not want to go through the pain and suffering of chemo to get an extra 3 months, if I am lucky. Nor do I want to put my family through that. A CAT scan last week showed that the tumor had doubled in size and is wrapping around the artery to my left kidney and spleen. I have lived a good and long life and want to leave this earth with dignity. I am going to have a Neurolytic Celiac Plexus Block this week to hopefully relieve some of the pain and discomfort I am starting to have. Have any of you had this procedure, which is done with an endoscopy? I will let you know hos the Celiac Block goes.👍

REPLY
1 reply
kathy74 | @kathy74 | 4 days ago
In reply to @sonomaga "I am a 92 yr. Old woman and was diagnosed with Stage 4 pancreatic cancer 4..." + (show)
@sonomaga

I am a 92 yr. Old woman and was diagnosed with Stage 4 pancreatic cancer 4 months ago, with a prognosis of 6 months to a year left. I chose not to have chemo because of my age. I do not want to go through the pain and suffering of chemo to get an extra 3 months, if I am lucky. Nor do I want to put my family through that. A CAT scan last week showed that the tumor had doubled in size and is wrapping around the artery to my left kidney and spleen. I have lived a good and long life and want to leave this earth with dignity. I am going to have a Neurolytic Celiac Plexus Block this week to hopefully relieve some of the pain and discomfort I am starting to have. Have any of you had this procedure, which is done with an endoscopy? I will let you know hos the Celiac Block goes.👍

Jump to this post

I am 75 and was diagnosed with stage 4 pancreatic cancer in September 2024. I had the block in Octotober and they said it may wear off. So far so good. It took that terrible back pain away and I also wear a 12mg Fentanyl patch. I was on chemos gemsar and abraxane. They took me off the abraxane because of the awful after effects. They gave me a brake from gemsar because my Magnesium was very low, my glucose was 231 and my platelets were 58. The low for platelets is 150. I finally went back to chemo last Thursday, with a lower dose of chemo and have this week off but they want me to come in to check on my platelets. My Tumor was 7.2 cm and shrank .67 inches since October but my cancer is wrapped around the celiac axis and the body plus the tail. Onc. said I am inoperable and will not survive this disease but will not tell me how long I have. Good luck to you and I appreciate your decision not to have chemo because it wreaks havic with your body.

REPLY
Dennis A | @denam1 | 4 days ago
In reply to @56pan "https://ascopubs.org/doi/10.1200/JCO.20.01399 I spent some time reading up on chemotherapy induced neuropathy last night and over the..." + (show)
@56pan

https://ascopubs.org/doi/10.1200/JCO.20.01399
I spent some time reading up on chemotherapy induced neuropathy last night and over the past few days. This, in my opinion, is the best article I found. Bears out my belief that the only thing that helps is getting off chemo and plenty of time. I'll find out on July 17 after an MRI if I'm a candidate for SBRT for the two tumors I have that have been reduced due to the chemo. Liver and pancreas. If that procedure works and my oncologist takes me off chemo, I'll pass on the results here. I started on Folfirinox and am now on Gemcitibine/Abraxane. The Abraxane has made my neuropathy much worse.

Jump to this post

Yep. I was on the gemcitabine/abraxane for my last three chemo treatments and they did a number on me and my neuropathy. It got quickly worse during and after my treatments which were scheduled every three weeks apart. I’ve now been off all chemo for about seven weeks now and can report that I’m feeling a small amount of improvement but not enough to say I’m comfortable yet by any means. Taking 1800 units of gabapentin daily but I’m not sure it really does anything. Time will probably be the best healing process for it.

REPLY
chrk | @chrkuh | 4 days ago
In reply to @kakalena "My oncologist recommended B complex, which I was already taking. He also said Alpha lipoic acid,..." + (show)
@kakalena

My oncologist recommended B complex, which I was already taking. He also said Alpha lipoic acid, and L-Glutamine might help. I am on gem-brax and just had my 8th treatment which is when my neuropathy in feet started., so am taking all of the above, plus Epson salt foot soak really helped. As of today. 3 days later, no pain or tingling.

Jump to this post

Can u share dosage on each? Husband is really struggling with the neuropathy.

REPLY
kakalena | @kakalena | 4 days ago

Might have sent a partial list for dosing. Here's the whole thing again. B- Complex no dosage given, but be sure it is ""super" B-complex or it won't have B-12 in it.
L-Glutamine 2,000 MG. 2 x a day.
Alpha Lipoic acid 600 MG. a day.
The Super B complex you can get from a drug store. Alpha Lipolic drug store or Health Food store, L- Glutamine in capsule form (specified) Health Food Sore only. At least in my rural area. Hope it helps.

REPLY
valerina30 | @valerina30 | 4 days ago
In reply to @suelannon "My husband had Distal Surgery last July 2024 and could not eat. He had lost over..." + (show)
@suelannon

My husband had Distal Surgery last July 2024 and could not eat. He had lost over 40 lbs and still losing. Someone at work mentioned RSO to me so I asked Oncologist and she said she was
a big fan. He started taking that and it was amazing. He has gained back 30 lbs so far.

Jump to this post

Wow that’s great to hear. Did he get it from a dispensary?

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 18 hours ago
In reply to @smithpamelag "My 70-year-old husband received the news last week that some tissue samples from an EUS came..." + (show)
@smithpamelag

My 70-year-old husband received the news last week that some tissue samples from an EUS came back as cancerous. He has a complex medical history having had bile duct cancer in 2020, a liver transplant Feb 2021, Chronic Kidney Disease and alot of other things prior to that. Since he has transplant, he has frequent blood work including the CA 19-9 done quarterly as well as some scans. His CA 19-9 started to climb last year, nothing was showing up on imaging. Since July of last year its gone from 81 to now its over 10,000. CT Scan done today shows no masses on lungs. The MRI in March didn't show much either, but the most recent EUS did see some changes in the dilation of the pancreatic duct. We live in Cleveland, OH and get medical care at the Cleveland Clinic. Today we met with the surgeon and next Wednesday will be meeting with the oncology dr. But it sounds like the plan is chemo for 2-3 months. Repeat labs and scans to see if things have responded and if he's a candidate for surgery. He also has lingering post shingles nerve pain since January 2024, so constant pain has really worn him down and he's very sedentary right now. Not a great place to be when starting the chemo journey. Our questions this week for oncology dr will be the drugs used for chemo and how often they are administered. Sounds like they plan to do chemo 2-3 months, then retest/scan to see if numbers have dropped and if he's a candidate for surgery. We've got a long road ahead of us! Wondering if scans may have missed seeing any masses or tumors with such a high CA 19-9 number its seems like maybe its been there awhile.

Jump to this post

Welcome, @smithpamelag. You and your husband are no strangers to complex health journeys. I'm sorry that you are now facing pancreatic cancer. Fellow members have talked about chemotherapy and kidney disease in these related discussions:

See these two related discussions:
- Chemotherapy and Dialysis: Looking for others who have had both https://connect.mayoclinic.org/discussion/chemotherapy-and-dialysis/
- Kidney function and medications https://connect.mayoclinic.org/discussion/kidney-function-and-medications/
- Chemo with bad kidneys? https://connect.mayoclinic.org/discussion/helo-chemo-with-bad-kidneys/

How did you appointment with the oncologist go? What chemotherapy will your husband be getting? How are YOU doing?

REPLY
1 reply
smithpamelag | @smithpamelag | 17 hours ago
In reply to @colleenyoung "Welcome, @smithpamelag. You and your husband are no strangers to complex health journeys. I'm sorry that..." + (show)
@colleenyoung

Welcome, @smithpamelag. You and your husband are no strangers to complex health journeys. I'm sorry that you are now facing pancreatic cancer. Fellow members have talked about chemotherapy and kidney disease in these related discussions:

See these two related discussions:
- Chemotherapy and Dialysis: Looking for others who have had both https://connect.mayoclinic.org/discussion/chemotherapy-and-dialysis/
- Kidney function and medications https://connect.mayoclinic.org/discussion/kidney-function-and-medications/
- Chemo with bad kidneys? https://connect.mayoclinic.org/discussion/helo-chemo-with-bad-kidneys/

How did you appointment with the oncologist go? What chemotherapy will your husband be getting? How are YOU doing?

Jump to this post

Thank you for your reply. The appointment with oncologist went well. He spent 50 minutes with us explaining treatments and answering our questions.

Since my husband has liver transplant in 2021 he gets quarterly scans and CA 19-9 labs. They started climbing last year but nothing was showing up on scans. His CA 19-9 was 10,200 on June 14 and is now 15,000+ 9 days later when they took again. So while imaging isn’t showing much some tissue samples taken when they did an endoscopy by pancreatic head came back cancerous. They are going to redo an MRI and PET scan to get proper staging. It’s obviously hiding somewhere.

Chemo will start 7/9 and they recommend the two drug combo of Gemcitabine and Abraxine. He’ll go weekly for three weeks and then have a week off. And repeat cycle twice more so total of three months.

He mentioned the option of a four drug combo but was concerned about it being hard on him and didn’t want him to end up in the hospital.

It is good to know we have a plan now and looking forward to updated scan image results.

REPLY
View MoreView Less
Please sign in or register to post a reply.