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I should mention that her CEA 19-9 level was 4500. Also I took three different surgeons to finally get one who could place a stent in the bile duct. That was a week ago, and her billirubin level has dropped from 400 to 4! Yeah! Now if only she could manage to eat. So far she has been prescribed three different anti-nausea drugs, all have the same problem. As soon as she takes the anti nausea meds she throws up, which sort of defeats the purpose.

Tim

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.

Morning Tim,

Everyone hear feels for you and sends prayers.

Your main question on how long you have is always hard to get a straight answer from most oncologist - they are so reluctant to talk about it because honestly - everyone is different and they don’t really know. I have found that you ask them point blank, “If we don’t do chemo, how many months do you think we have?” (It seems like most of the time they give the generic “6 month answer”. Then ask if you do chemo, how long do we have? (Year or so seems to be a common answer). Again, a lot depends on how well the chemo works specifically for you. Sorry there is a better answer. Again, my answer is just from my experience and having learned that you really do have to be assertive and push back for an answer. Prayers 🙏🏻

Walter

So great to get good news like this!!

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).

199,
I can really relate to your comment! Congrats on your success! So no cisplatin for you at all? My onc says he’ll take me off the cis eventually in order to lighten up the side effects I’m getting. Approx how much did your tumors shrink (20%, 50%?). What is radiologic remission? What is the step down of your ca19-9 from your original test after all of your chemo treatments?
Thanks!

Hi, I am very new to all of this since having CT/ultrasound diagnosis in Feb and a pancreas/liver biopsy the end of Feb. Met with oncologist yesterday and was told that it is neuroendocrine grade 2. He has offered once a month injection of Lanreotide to start with. Trying to find out what I can about the diagnosis and treatments.

What a great positive comment
News we all need to hear
Thank you for that encouraging news
No One knows how long any of us has on earth
And yes..prayers help

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.

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.