Pancreatic Cancer Group: Introduce yourself and connect with others

@srhyne I was diagnosed with pancreatic cancer earlier this year - in NC and currently being treated at Duke. I decided to record my experiences and thoughts that I hoped would be of some use to the newly diagnosed patient and their families. My notes are now available in e-book and paperback format and you can read a sample at the following link to help determine if it might be right for you - https://www.amazon.com/One-Path-Among-Many-experiences-ebook/dp/B0BBD5ZVTG Best,

Hi Colleen. I just found this group and I'm hoping the members can give me and my husband some insight on PC Stage 4. Its for my father in law who we moved into our home to SoCal from the mayo clinic in Scottsdale. his insurance didn't cover him for further treatment there (unfortunately) . He is 62 and diagnosed July 18th. Port put in for chemo Aug 18th and still no chemo. He has NO appetite and getting him to drink water or anything is Next to impossible. pain is horrible and watching him suffer is just heartbreaking. Any ideas on how to get him to eat something, or pain tolerance? Our next step is the ER & hope he gets admitted to at least get an IV into him with fluids......

@chiwivalencia
You need to get him into a National Cancer Institute hospital with pancreatic specialty. You didn't say what aspect of his insurance wouldn't cover Mayo treatments. You said he wasn't on chemo yet so what was Mayo doing for him? My wife started chemo the day after installing the port so that shouldn't have delayed chemo.

Good luck.

He is on medicaid/care and Mayo only accepted him due to an emergency visit. One week of tests, diagnosis and release. In my opinion its his insurance HMO low income causing delay.

@chiwivalencia FYI, he should qualify for disability from social security and they expedite requests from pancan patients. Perhaps addl funds will help with co-pays, etc.

@chiwivalencia, you can get specfic answers to your questions about insurance and possible solutions by calling Mayo Clinic directly here:
- Mayo Clinic Insurance https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance

I hope you get answers and care for your husband. I agree with @beachdog that getting care at NCI cancer center is best.

Bpope, you may wish to browse through all the discussions in the Pancreatic Cancer group (https://connect.mayoclinic.org/group/pancreatic-cancer/). There are several discussing Whipple surgery that I think are very helpful. Here's one to get you started:
- Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

@jschuck, you're in good hands at Mayo Clinic, especially since your husband is dealing with cancer and a heart condition. The multi-disciplinary approach helps. Mayo Clinic offers expertise in addressing heart problems (called cardio-oncology). The Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.

You might also be interested in this discussion:
- Anyone on Gemcitabine with Abraxane? How long? Effective? https://connect.mayoclinic.org/discussion/gemcitabine-and-abraxane/

How is your spouse doing?

Hi everyone...My name is Christie and I was diagnosed with Pancreatic Cancer November 3, 2020 at the age of 49. In December 2019 I went to the ER on Christmas Eve for a kidney stone. I knew I had the stone but it decided it wanted to celebrate as well. I went to the ER, got my usual pain cocktail when I have a kidney stone attack and was told that I had a stone in each kidney after my CT w/contrast. Typically I look over my test results and labs but I didn't this time because I already knew I had a kidney stone. The only one I thought I has was found in February of 2019. Fast forward to September 2020 (9 months later). I was rear ended and because of my injuries (minor ones) I was referred to the chiropractor by the ER doctor. I also had x-rays and and tests while in the ER for this accident and they said the same thing - I have kidney stones and that I had a concussion. This accident however saved my life. Before going to chiropractor I pulled my records from Christmas Eve 2019 because I wanted to see where my stones was located and the size. I have issues passing stones and wanted to make sure it was not bothered by my upcoming therapy. As I was looking thru my CT scan I noticed (3) issues on the final diagnosis - (1) - Kidney stone left kidney (2) Kidney stone right kidney and (3) 11.4mm tumor in pancreatic tail that needed follow up with an MRI protocol. I was floored to say the least. I immediately made an appointment with a gastro doctor at MUSC. Saw her on the last Thursday in October, had a biopsy on the following Monday, November 2nd and I was told when I woke up that I had Pancreatic Cancer. Surgery followed November 30, 2020. I had my pancreatic tail removed and my spleen. My spleen was fine but because of all of the connections that would have needed to be made from the tail removal it was safer to just remove it. My tumor was encapsulated which was a gift in itself. I was diagnosed with T1N0M0 tumor which is a stage 1 with no metastases. I was very lucky. This tumor developed to the size it was between February 2019 to December 2019 and I had it for another 11 months before it was removed. Surgery removed the tumor and no treatments (chemo or radiation) were necessary. I am the owner of my body and it is my responsibility to look over my paperwork however, I should have been told by the ER doctor what they found. I was drugged up and there was no mention of this to me or my daughter. I have read articles that say symptoms typically do not show in the first stages but I disagree. I did not lose a significant amount of weight because I have thyroid issues and my weight fluctuates. I did not have jaundice BUT I had terrible heartburn, my left side just under my ribs hurt terribly but not all of the time. The pain did radiate at times to my back. I had side cramps, loss of appetite, fatigue. Felt full after just a few bites. No family history of pancreatic cancer. Those symptoms could have been any number of things but they weren't. They were my tumor. My cancer. Doctors just shrugged it off as Gerd and prescribed heartburn medicine. No one wanted to listen but that hateful, non-discriminating disease was lurking and growing. I thank GOD every day for sparing me but I am realistic. I know cancer can come back and that it can come back with a vengeance. I go for 6 month check ups until December 2025 with my next one next month. I am always positive. That is what got me thru this. I had surgery on a Monday, was up walking around on Wednesday, went home on Friday and back to work the following Wednesday with my lovely accessory called a drain. Power of positivity.

This is positive to hear. Thank you for sharing.