Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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!

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).

So great to get good news like this!!

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

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.

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

My wife (75) has just been diagnosed with pancreatic cancer stage 4. After two months of tests, imaging, doctor visits, etc she will be starting chemo tomorrow.

We both have a problem with getting anyone to talk about how long she has to live, how much time chemo might add, how treatment will affect quality of life.

If chemo will add one year of life, but will make most of that year miserable, we have to decide if it is worth it.

Has anyone else dealt with these questions? I know that the five year survival rate is very low (like 2-3%) but no one will talk to us about it.

She is very miserable right now, hasn't been able to eat much of anything for two months, has lost 25 pounds (an she only weight 130 when this started) and has no energy, and vomits whenever she tries to eat solid food.

Tim White

Hi Eva,

Many of us on this forum have had the Whipple surgery for cancer in the head of our pancreas, and a few for cysts or other issues that were not cancer. My experience is only with cancer, so I don't know much about pancreatitis or other issues with inflammation.

The Whipple is not an easy surgery to perform or to recover from, but is manageable with patience. The surgery itself takes 6-8 hours on average. It can be done as an open procedure or via laparoscopy. The recovery time includes about 7 days in the hospital, and then about 6 weeks of adjustment at home. The first 2 weeks at home are mostly for your incisions to finish healing and returning to a normal diet. The next 4 weeks include adjustments to your diet. The insulin production of your pancreas may change, requiring you to figure out a new schedule of dosing. Also, you may find you need to supplement your diet with enzymes to help digest certain foods, mainly fats. It is sometimes helpful to east small meals and stay near a bathroom as you make these adjustments. The changes in your bowels can cause an unpleasant surprise. (I hope this translates properly to Spanish!)

Finally, even if your Whipple procedure is not for cancer, it is still recommended you find a very experienced surgeon at a center of pancreatic excellence to perform the surgery. I'm guessing the "PR" in your name means you're in Puerto Rico. If you are not able to find a surgeon you trust in PR, there are several in Florida.

I hope it all goes well for you!

Hola! Tengo 63 años y soy diabética. En general me siento muy bien y he tenido más de 30 pancreatitis en mi vida SIN dolor. Me suben las enzimas hasta 30 mil, pero no dolor o muy poco. Tengo un quiste en la cabeza del
páncreas. Pudiera ser canceroso y tendré un whippler en verano. Tengo mucho miedo. Quien ha pasado por eso? Tendré mucho dolor? Estaré inflamada? Cuánto tiempo te hiciste la cirugía? Tardaste mucho en recuperar?