Pancreatic Cancer Group: Introduce yourself and connect with others

I have a sister that went through a procedure to remove her pancreas and she is cancer free for 3 years, My younger brother was diagnosed about 18 months ago and was not as fortunate as he has only weeks left to live. I am exhibiting some of the same symptoms they had and am going for adnominal MRI with Contract next week. Concerned that I am headed for the same fate as my brother. I am 68. I have been healthy as I frequently exercise, non smoker, mild drinker and I do not have the gene mutation.
Current symptoms started 6 weeks ago with cramping, loose stools (liquid) and just this week pain in my back.
I spend winter in South Florida and will be headed back to the Philadelphia are for more testing.
Are there foods or drinks I should gravitate towards to slow this down?

Hi, my most difficult symptoms have been digestive related (intermitent diarrea, stomach pain, weight loss, poor tolerance to many foods, etc); also some days I lack energy and feel somber.

Thank you for the response. Beyond having a complete diagnosis at this time its the unknown that is bothering me. I need to follow some steps which will take time to get a diagnosis and that's playing with my mind as I watch my siblings.

Hi everybody!

I was diagnosed and treated for distal cholangiocarcinoma locally in January 2024. Began local chemotherapy in early February 2024. A scheduled visit to Mayo Rochester in April 2024 for scans, consults, and to assess suitability for surgery.

I am looking forward to learning/sharing with this group.

DEM

Hope your weekend was good. No party for St Pat for us this year.
When you say 44 treatments, what does that look like? Several times a week....
I am anxious that I haven't started chemo.
How long from diagnoses to start of your chemo?

@cealia56 , I went about 5 weeks between diagnosis and first chemo, in part due to a miscommunication or (long story) lack of understanding the process.

Life on chemo depends a little bit on which chemo regimen you're getting.

Folfirinox is typically one treatment administered every other week. The Gemcitabine-based regimens are usually one treatment per week for 3 weeks in a row followed by a week off, but my regimen is every other week.

I'll be getting my 42nd treatment this week. I had 12 of the Folfirinox before my Whipple surgery, and I'll be getting my 30th biweekly Gemcitabine + Abraxane + Cisplatin treatment (over 14 months) on Thursday.

With either one, you'll probably start with a blood test to check your CBC, CMP, and tumor marker. If there's a quick turnaround lab at your infusion center, the test might be done in the morning before your infusion. If not, they might ask you to go to a Quest or LabCorp draw facility 1-2 days before chemo.

On chemo day, you'll probably start by seeing the doc, PA, or NP to go over the results, make sure your counts are appropriate to receive chemo, and answer any questions.

If you get the green light, you'll spend 3-5 hours of your chemo day in a comfy chair with an IV bag or two flowing into your chest port (if installed already; arm IV is possible if not). They usually start with anti-nausea med IV's first (sometimes with saline added), followed by the chemo drugs.

At the end of the day, for the Gem regimens, they disconnect the IV from your port, flush it out, and send you home with a band-aid or gauze over the port. With Folfirinox, they hook you up to a portable pump with a neck-strap that you take home and wear (or set on a night stand) while it infuses the 5FU drug over 46 hours. After two nights of this, you typically return to the infusion center for them to disconnect and recharge the pump, then have the chest port flushed and dressed with a band-aid.

Some Folfirinox patients that travel far to get their infusion have a home-care nurse come by two days later to disconnect the pump and flush/dress the port, sparing them another long trip. A few other patients are able to do it themselves, which not only saves a trip, but makes it possible to get chemo on a Thursday or Friday if you're able to disconnect it yourself at home on a Saturday or Sunday.

St. Patrick's Day still involved a party; I don't want to let this drag my life down any more than I can avoid! But it was limited to one hour and one non-alcoholic beer before I needed to take some enzymes shoot some insulin. A small price to pay. 🙂

Wishing you the best as you get started and get through this.

Hello @demooretucson and welcome to the Pancreatic Cancer support group on Mayo Connect. I am glad that you found this forum. It will certainly help you to not feel alone on this journey.

In this discussion group you will meet several long-time survivors of pancreatic cancer such as @markymarkfl @stageivsurvivor and others. I'm sure you will find encouragement and support here.

As this is a rather new diagnosis for you, please share a bit about yourself, as you are comfortable doing so. For example, were there symptoms that led to the diagnosis, what type of chemo did you begin in February? By sharing this information, you will undoubtedly meet others who have also had similar treatments.

It is great that you will be seen at Mayo Clinic in April. If surgery is possible, will you have your surgery at Mayo?

Teresa -- Depending on how the scans and consults go the week of April 22, I'm planning to have the surgery done at Mayo Rochester. It would be helpful to know an approximate recovery time from a Whipple Procedure. In December 2023 all of my blood tests were normal, bilirubin in particular. From January 18 to 22 my urine turned rust colored and would not clear no matter how much water I drank. I checked into the Tucson Medical Center Emergency Room and they added jaundice to the diagnosis. In less than 30 hours they treated the biliary duct passage with a stent, biopsied, diagnosed and connected me with a local surgical oncologist.

The biopsy showed adenocarcinoma. A CT scan on 2/24 did not show that the cancer had metastasized in my chest or elsewhere. On 2/1, it was assessed as borderline resectable pancreatic cancer with a diagnosis of distal cholangiocarcinoma. The University of Arizona Cancer Center has an outstanding oncologist. I hoped to start treatment at Mayo Rochester, but the fastest way for me to start chemo was local, and that began on 2/12. So I postponed and combined our visits to Mayo Rochester in February and March into one visit the week of April 22. I'm treated with gemcitabine, Abraxane, and cisplatin every two weeks. After my fourth treatment on 4/2, the plan is to see if the tumor is suitable for surgery. I'm planning to have this assessment at Mayo Rochester the week of April 22 with surgery, if possible.
DEM

One significant correction -- A CT scan on 1/24 (not 2/24) did not show that cancer had metastasized...