Diagnosed with Stage IV pancreatic cancer: Not going well, need advice

Posted by pj27393 @pj27393, Oct 14 11:06pm

Hi, after several weeks of stomach pain and nausea I was diagnosed with stage IV pancreatic cancer (primary tumor is on the head of the pancreas) with metastasis to liver and possibly lungs. Left hospital after 3 days and met with oncologist and gastro outpatient. Was readmitted to hospital on 9/30 due to billiary obstruction. Was unable to get stent due to tumor invasion through the primary bile duct, they installed an external drain instead. Since then have had 3 paracentis to drain fluid, 2 last week and l this week. Bilirubin remains elevated, WBC is high and anemia ensues. At this point I am unable to receive chemotherpay because my body is too weak. I have now had this cancer almost a month-when first diagnosed I was told I had maybe three months with no treatment so the plan was to get treatment but my body is not cooperating obviously. They are sending the last paracenticis fluid for cytology to find out if there are cancer cells in it as well.
Either way I don't know how to proceed. I can't seem to get healthy enough for treatment and don't know if I should be thinking about hospice instead. Don't want to give up too soon but I also want to have some control over my final weeks. If I can get discharged to skilled nursing I cannot receive cancer treatment there due to insurance rules but coming home in my current state doesn't seem "safe" right now either- my wife is disabled herself with lupus, heart and liver problems of her own. Losing about a pound a day and can't eat when the fluid builds up too much. Any advice from those of you have been through it or expereinced it with a loved one? How often does hospice come if you are at home? Will most of my care fall on my wife? We are still in the process of telling family as we have had so little time since diagnosis. Thanks in advance for any and all suggestions- you won't hurt my feelings by being candid

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

marienewland | @mnewland99 | Oct 15 7:35am

Hello @pj27393 just as a reminder not a medical professional here, just a pancreatic cancer patient since 2022 and daughter of a dad who had pancreatic cancer 25 years ago. I’ve learned almost everything I know about this disease from this support group. First is make sure you are being treated at a pancreatic center of excellence which you can find out from the Pancreatic Cancer center network online. What city and state do you live in? Know your mutations; you can know this from any biopsies, germline DNA bloodwork done, or I believe from the fluid from the paracentesis as mutations can help your drs direct the treatment you receive. In 2022 I was in stage 2 and lost 60 pounds most of it following the complications from my distal surgery. Appetite not there much when you have abdominal issues so someone advised I eat anything like ice cream, donuts, etc. Carls Jr. hamburgers helped me put my weight back on. I did 12 cycles of chemo and then was told by my oncologist that I was cancer free. This is 4 months and then it spread to my liver. On a different chemo since January of this year which destroyed 1 small liver lesion and almost the larger one of 1.7cm to 0.9cm and getting that radiated with MRIdean. Will find out today if cancer spread to my lung during a short 3 week break from chemo or if just a nodule from difficulty breathing from my new domicile that is close to the beach (humidity). With my dad who lived with us while I worked full time, we had home health aide 2x per week and a nurse once a week, and if my dad permitted it I would hire someone 1x per week and my husband who was self employed would help out and then during the day. I took care of my dad at night and weekends as I could but he was stage 4 and it was almost in every organ in his body by the time he was diagnosed so there really wasn’t much I care I could provide. I made him protein shakes and grilled fish for him but very quickly his diet advanced to just Ensure shakes 3x per day. Get cancer antigen test CA19-9and others that are out there to get an idea of the aggressiveness of the mutation. Also, consult with a nutritionist. There was a time I could only take in chicken broth and jello and some protein shakes my neighbor provided. It’s the “naughty” foods however that will put on the weight. Know that I will be praying for you as it helps.

sdd3460 | @sdd3460 | Oct 15 3:50pm

I also am not a doctor, but have experience with a loved one, so take this for what it is worth. 1. If your pancreas is significantly impaired you will have trouble benefiting nutritiously from what you are able to ingest. Check whether you need to supplement with pancreatic enzymes (Creon or ZenPep are typical). 2. Ask about available clinical trials at your hospital. Also consider the PanCan Action network website to search in your vicinity if able to travel. 3. Get a second opinion. 4. Seek the prayers of others and be at peace with yourself, your loved ones and wherever you are in the disease process. This is the hardest thing to do, but also the one over which you have the most control.

mayoconnectuser1 | @mayoconnectuser1 | Oct 16 8:36am

I am not a medical professional, pj.

I will be candid. My sense is you need to immediately consult at a pancreatic center of excellence - given your stated circumstances, this may buy you time to work with your family on care options, and to take care of estate matters - fly or drive - as soon as you can make arrangements. Most have the ability to interview and sometimes arrange via phone.

I found an estate attorney who assisted my sister in sorting things - and he was able to do this via Zoom/Facetime - a huge help under the circumstances. This might be especially helpful if family is not available. She noted she found this closure helpful.

Re hospice care, my wife and I moved into my sisters' home (she insisted on being around her cats), we provided around the clock care, with hired pseudo-nursing staff for eight hours per day, and hospice nursing dropping in an hour a day - in her case, to drain her continuing ascites, and to status and instruct me use of pain meds.

pj27393 | @pj27393 | Oct 16 2:05pm

Thank you, the patient my husband is mainly sleeping in the hospital now, kidneys are starting to go the way of the liver. Meeting with hospice this afternoon. Has anyone used care.com to hire additional help?

mayoconnectuser1 | @mayoconnectuser1 | Oct 16 2:47pm

Aww, pj, we are all so sorry to hear of this - we know how difficult it is.

We used a local company for care - mainly to provide some time off for my wife and I. The hospital can assist in providing points of contact for you - and, in many cases, they will meet with you in the hospital - both caregiver companies and hospice.

My sister was single, and had no children. I was her only sibling.

I cannot overemphasize how important it is to seek assistance in reviewing financial circumstances, life insurance, wills, and estate options. I know it is overwhelming to even deal with day to day activities - however, being busy will likely help you - and give him some comfort as time goes on.

Please ask any questions?

gamaryanne | @gamaryanne | Oct 17 7:45am

All here are so sorry this could have gotten to this stage so quickly for you.
Ascites being drained may buy some time but usually not a good sign. Perhaps the hospital has him on TPN to help build some stamina so that he can get home if he desires to.
I am not a medical professional and cannot add any advice other than what you have seen.
I hope you will pray together for peace in your family and between you so that his stress can be at a minimum. Very hard discussions, but having everything finalized is best for both of you. 💔