Pancreatic Cancer Group: Introduce yourself and connect with others

@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.

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?

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

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, 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.

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?

Hello @mordka and welcome to the Pancreatic Cancer support group on Mayo Connect. I can understand that you would like to meet others who have had a similar experience. I would like to invite two members of Connect who have had successful treatments for advance pancreatic cancer. They are @stageivsurvivor and @markymarkfl. I think you will find their experiences to be very helpful to you.

In the U.S. palliative care is for people with serious illnesses. Here is a link to some information from Mayo Clinic's website about this type of care,
--Palliative Care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
What are your most difficult symptoms now, @mordka?

hi, wanted to indicate that the finding of the metastases on my liver implies that my cancer has advanced to stageIV. The oncology team indicates that all care from this point on are palliative. Understand what the term stands for, but not sure that the is any chance at all of a long survival time. Best regards

Hi there, I´m a 66 yrs old man currently residing in Chile where I was diagnosed PANCAN back in July 2022. I had a 2.5 cm tumor in the head of my pancreas. It was determined that I was elegible for Whipple, and given the option to have neoadjuvant chemo, decided to go for the surgery right away (end of July 22). The surgeon that performed the operation is highly respected for the numerous successful Whipples he performs. The 7 hr procedure went well; the pathology report indicated that all 11 lymph node tested were negative and just the mesentheric artery showed positive (wrapped at 60 degrees). Began 12 cycles of Folferinox in Oct22; tolerated them relatively well, but had very low white and red cells count. Developed anemia and had to have a blood tranfussion; also had "FERINJECT" iron supplement. After the chemo I had 25 sessions of Radiation (5/week times 5 weeks). Had a tougher time tolerating these, went through them anyways. Completed Radio by the end of July23. Since I had regular checkups which included blood and CT. First one in Oct23, CT normal, CA19-9 down to 17. Next checkup in DEC23 showed the CA19-9 had risen to 37. The oncologist requested that I had another set of blood an CT before I saw him in Feb24; this time CA19-9 was 57, andthe CT showed a suspicious spot on my liver and an MRI was taken. The MRI confirmed that if was a 0.6 cm lesion, and recommended to "watch it closely". After discussing with the oncology team, we decided not to wait much longer and will begin a 12 cycle of Folferinox to begin in a week. When discussing survival time between having the chemo vs not, I got the standard answer: "4 months on the lower side (no chemo) and 12 on the higher" this is the same I was told when I began the first process.
Additionally my surgeon is recommending to remove the spot after the 4th cycle of chemo, ONLY IF a PET Scan an and MRI confirm that the lesion hasnt progressed in size nor into other organs; the go back to complete the remaining 8 cycles of chemo. The oncologist agreed, although he indicated to me that "there isnt enough data that supports that his woulD help. He said: "go ahead and do it if it gives you a piece of mind, it wont hurt"
I would like to hear from people in the group that has experienced or has knowledge of something like what I have described.
As a side note, my biggest issues are gastric, as I read happens to most of the people that have gone through Whipple. I take Creon with my meals, Additionally, I am celiac wch further complicates things.
Sorry for the long post, but I wanted to try to give as complete of a picture as I could. Thanks in advance for all of your support. Best CJM

Impressive research there. Ive read you have a good scientific background, can you briefly explain the link between CAR-T cell therapy and Claudin 18.2? I have ATM related mutation (base substitute 40). Also, does the vaccine work if you are at stage 4, or is it just preventative if you’ve been cleared at say Stage 1 or 2? Thanks!