Pancreatic Cancer Group: Introduce yourself and connect with others

I'm sorry to hear this. I'm not any kind of medical expert, just a patient, so please take what I'm about to say with many grains of salt. I also am a stage 4 patient. I was originally diagnosed 3/29/23 via endoscopic ultrasound and declared stage 4 on 4/6/23 after a laparoscopy. I was 70 at the time.

When I was diagnosed, my (first) oncologist told me I had "one year, two years, three years" to live and that I'd be "feeling it in a month or two." As you can see, I'm nearly at my one-year mark. I am in no pain; I don't even take Tylenol. I finished my 20th chemo round on Tuesday 2/20. We have agreed that I'll do chemo as long as I wish and as long as we get good results. FYI, I'm on the modified Folfirinox regimen, dosed at 60 percent of the typical level. What I mean to say is, there is hope, and others on this board will say this too. But fighting pancreatic cancer is hard work. It's a real slog.

* Which chemo treatment will your wife receive? What is the dosing level? My oncologist was going to dose me at 100 percent of typical, but then realized I was 70. He said the dosage hadn't been tested on people as old as I was, so he reduced round 1 to 80 percent. Even with that, it was awful; it made me very sick. Beginning with cycle 2, he reduced the dose to 60 percent of typical. So ask about your wife's dosage level, and talk about what would be best for her.

* Do you have a palliative MD on her case? At my cancer center, every patient is automatically referred to a palliative MD. This is not for hospice care. This MD is in charge of managing symptoms and side effects of cancer diagnosis and treatment. He/she can do a lot to help her feel more comfortable.

* Re the nausea and weight loss, whether you have a palliative MD right now or not, make sure your wife's oncologist knows about her extreme nausea, and ask them about medications and management techniques. She will (or should) get a lot of premedications before chemo that are designed to minimize nausea. I get Zofran, dexamethasone and Emend. At home, I was told to alternate Zofran and Compazine tablets for two-three days after chemo. Keep a lined trash can near her at all times. Also, be sure that she receives adequate fluids so she doesn't get dehydrated. There are lots of posts on this board about diet ideas, so I won't go into those. Besides, you don't have time today! In general, keep meals very small and more frequent. I emphasized bland foods at first, and I also had a lot of food jags that kept my husband running to get those strange things I suddenly craved. I lost weight at first too, but have gained it back and a bit more besides.

I hope some of that helps. Ask questions, make notes, do research. The chemo nurses are tremendous resources, so you can talk to them at the infusion lab today as well. Ask your MD about these issues and anything else that comes up. If you need a second or third opinion, push for that. If you need to consult with an MD at a pancreatic cancer center of excellence, push for that. But as you already know, time is of the essence, and starting treatment ASAP is key. I hope today goes well for both of you.

TWW,

So sorry to hear you are going through this. Don't get disheartened, however, a lot of work is going to be needed.

First - and I am making an assumption - that your wife is being treated at a local facility - not a center of excellence? If at a local facility, please consider immediately going to a cancan center of excellence - there are a hand full of these in the US. Don't wait. Move there if you are not close enough to drive for THEIR chemo and access to THEIR teams and equipment.

Second - my sense (I am not a medical professional) is that chemo is required - for as long as your wife can stand it. Do not be lulled into sense of being cancer free - even with a successful Whipple and six months of chemo. Chemo may be needed for years.

Everyone is different - but, there are some consistencies.

Marienewland,
Thank you for the congrats. It is a hard decision to make to take a break from chemo. My body seemed to be telling me it was time. No cisplatin at all; only the gemcitabine & Abraxane. My oncologist did have to decrease the dosage some due to side effects & that helped a lot. Radiologic remission is the tumors are no longer seen on CT scans (last 2 for sure) & metastatic sites on my lungs were stable. Also, my CA19-9 went from 450 (at diagnosis from EUS) to 8 and was hovering near 35. My doc was not too worried about the CA 19-9 since it can be affected by other issues such as benign breast disease, emphysema, inflammation, gallstones (all issues with me for a long time). Next CT is 25 March and visit with oncologist on the 28th.

mayoconnectuser1,
“Don’t be lulled into sense of being cancer free” is terrific advice and one if the best to be given and it’s not about being negative. I’ve learned a lot from this site, but mostly that pancreatic cancer is an extremely aggressive cancer and different from breast cancer and prostate cancer. There are 3-4 DNA mutations associated with it and FOR NOW it’s very difficult to beat. Very rare cases it becomes undetectable, but it’s not the norm at all so be vigilant and top of your testing. That’s the mistake I made with my first care at Hoag Pancan oncology team. They kept telling me I was cancer free and would get upset with me because I wouldn’t buy their deceitful mantra at first. When I finally did after 4 months of completing chemo my cancer came back and I’m in stage 4. I see many posts of variations of maintenance chemo and sometimes radiation that can keep your tumor(s) and/or lesions under check; but it’s a fight of what you personally can tolerate. This sounds glum, but I’m so happy to be alive now through chemo with its harsh side effects of nausea, weakness, and neuropathy. 23 years ago I saw my father suffer (for only a few months until he succumbed) immensely from pancreatic cancer especially as he was under the direct care between my husband and me. We’ve come a long way since then but we still have much more to go and we all are part of tomorrow’s success stories for future generations through clinical trials and varying schedules and types of chemotherapy. I do believe that one day scientists will figure out a way to mitigate the ill effects of the mutations we have. If you believe in prayers I pray for everyone of us, and if you don’t, then I wish you good will and luck.

Tim, I was diagnosed with stage 4 in June of 2022. My cancer is adenocarcinoma & started in the tail but had metastasized to the lungs. At the time I was told it was inoperable, I asked what the prognosis was & was told 2-3 months without treatment & 11 months with chemo. I have surpassed that & was happy to send a note after the 11 months to that doc that I was still alive & doing well. I have had 44 Chemo treatments with gemcitabine & Abraxane & am now in "radiologic remission".
So no one can really tell you how long or how you will feel. I knew I would lose my hair & I did. I thought I would lose weight & gained 20 pounds. Every patient is different.
Some do not like to talk about prayers, but when asked that was what I asked for, not stuff! I believed those prayers helped me fight this & hopefully will continue to soldier on 🙂
Sure there were times I was depressed but I made it through.
Praying for the best for you & your wife. ( I am 74).

My sense is that medical professionals aren't being deceitful ... but are rather providing information related to their knowledge.

I believe when dealing with potentially deadly diseases like pancan, medical professionals don't want to sound dire ... it's a tough line to navigate.

Hello 199,
Thank you for answering my questions which probably sounded a bit intrusive, but they give all of us hope! I’m so glad to hear about your success and it’s good to know you can remove the cisplatin and still get fantastic results. Not to sound like a Debbie downer, and just based on my own personal experience which could be different from your own, but keep good watch on that ca19-9 and get it checked regularly (not every 3 months). Go to your primary care dr if necessary to get more orders if your oncologist doesn’t want to.

Hello my name is David.
I am 78 and was diagnosed with stage 4 pancan in November 2023. Since I have comorbidities (heart issues and pancytopenia) I am told there is nothing they can do, no chemo or radiation, or even clinical trials. I was told I have between 2 and 6 months to live. Kaiser Permanente in Southern California is my provider. Does anyone else find themselves in a similar situation and how do you deal with it?
Thanks for any help.