Pancreatic Cancer Group: Introduce yourself and connect with others

Hello. Thank you.
Yes, I will have to check my notes as I don't always remember specific details on treatments as it's been 10 years. Reading and finally commenting on this forum has been rewarding. I guess I have always been a little private with my cancer journey but this is a great outlet to read and connect with others. I have a fantastic oncologist at Regions hospital ( Dr. Jahagirdar) in St. Paul where I was referred by Dr. Xiao Feng, my doctor at the time. I first had symptoms in Fall of 2014 and the process of getting diagnosed and treatments followed fairly quickly. I began chemo in January - February 2015 at Regions cancer center. (I need to check my notes for chemo details). Skipping ahead to July of 2015 I had unsuccessful surgery at Regions and thought that was it. Dr. Wolpert, my surgeon was great but the situation ended up being more complicated and he backed out after an hour or so. So the process started for a plan B.
Don't remember all details here either so I'll jump to January 7th 2016. I owe my life to Dr. Farnel and his amazing team at Mayo where he performed successful surgery and that is why I am alive today!

You're welcome! Great to hear. The phrase "take it one day at a time" is so true. It's difficult to wrap your head around everything so I found that just focusing on today, doing what you can and being grateful for what I do have helps.

Hello all, I'd like to know if anyone has been on Gemcitabene/Abraxane for a long time as a treatment to put them into and keep them in remission? I just completed my first cycle, and things are going in the right direction with minimal side effects. My full history below:
Scan is key. My CA19-9 was 192 before surgery on February 9, 2024, I was resectable stage 2, 3 of 26 lymph nodes were involved, some nerve involvement, but all margins were clear. My CA19-9 dropped right down to 5 after surgery, stayed around 5,86,7,8,11 all through Folfirinox. I was hopeful for a cure. Last infusion was September 13, then I had a CT scan October 2nd and darnit, 2 lesions in my liver and two tumors in the soft tissue under the skin in my belly (apparently extremely rare to have metastases to soft tissue, but confirmed). And on October 17th, one month after my last dose, my CA19-9 was right back up to 195. So I'm now Stage IV, just finished my first 3-week cycle of Gemcitabene/Abraxane. Good signs are that the tumors in my belly stopped hurting after the first infusion, and my CA19-9 dropped from 195 to 174 after my first infusion, and down to 121 after my second. Sure hope it keeps going!

Welcome, @jeffp. you sound like you're building a great support team and resources around you to embrace the next chapter.

A number of the things you are seeking information about from fellow patients and members have existing discussions, such as nutrition, Creon, neuropathy, cannabis, etc.

You might want to use the site search or pancreatic cancer group search to find related topics, for example:
Creon-related discussions https://connect.mayoclinic.org/group/pancreatic-cancer/?search=creon&index=discussions

Or check out the discussions about neuropathy and emotional health living with cancer in the
- Cancer: Managing Symptoms support group https://connect.mayoclinic.org/group/cancer-managing-symptoms/

I look forward to reading more posts from you.

Hello @mohammed01 and welcome to Mayo Connect. I can understand your concern about your father's continued weight loss and inability to eat without pain and diarrhea. As @gamaryanne has suggested, a digestive enzyme like Creon might be helpful to him. Most patients who have had surgery use this type of enzyme. Is his doctor willing to prescribe this type of medication for your dad? Here is a link with information about Creon, https://www.creoninfo.com/.

You mention that your dad is not able to eat a full meal without symptoms. Has he tried eating multiple, small meals throughout the day?

Since his surgery was three years ago and he has lost 120 pounds, have you considered getting a second opinion? If you do get a second opinion, it would be good to get that consultation from a Pancreatic Center of Excellence. Mayo Clinic would be a great place for this type of consultation. Here is a link with appointment information,
http://mayocl.in/1mtmR63.
If an appointment with Mayo Clinic is not possible for any reason, then the Pancreas Foundation website might be helpful. Here is a link where you can input your location and find the nearest center of excellence, https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/

I look forward to hearing from you again. Will you continue to post with any questions or concerns?

ZenPep, very similar to Creon, helped my husband tremendously.

Thank you for your response and support. I’m in a small town and have reached out to PanCan who gave me some great advice as well. I think I have a few good doctors in my care team and in the beginning of my journey. Again thank you for your support!

Hello @tjk and welcome to the Pancreatic Cancer support group on Mayo Connect. I appreciate you sharing your cancer journey here on Connect. It really does encourage others to hear stories of successful treatment and life after a pancreatic cancer diagnosis.

I look forward to hearing from you again. As this is your first post, would you care to share more about your journey. Such as how you found referrals and the type of treatments you have received?

10 year survivor and still on the forum reaching out to others! So fantastic and I hope I can say the same someday; only 8 more years to go!

Hello mchris327. I am sorry to hear and is understandable to be overwhelmed. I am a 10 year survivor and was fortunate to get good care right away. Sure there are challenges being in a small town so you will need to get some referrals. PanCan ( Pancreatic Cancer Action Network is a wonderful resource so maybe contact them. I am sorry you are dealing with this but there is hope. My best to you in your journey!