Pancreatic cancer stage 4: staying hopeful with your support

@pvctom2021, I'm sorry to hear that you are having a hard time to get answers from your cancer team when you need them. Do they have a patient online portal where you get treatment? That might be an easier to get your questions answered.

Like @gamaryanne, I wanted to ask about your port. Did you get it installed? How are you doing?

@colleenyoung

Thanks Colleen.. I did call the patient portal pod line, and the nurse got back to me.. I have not had the port installed yet, I need to get well first..,I’m not doing well on chemo….thanks for your concern 🙁 bless you
pvctom 🙏

My husband will be getting his 2nd chemo this coming Wed as well for stage 4 PC that has spread. He felt a little crappy for a few days after his first but is better now. Hoping it stays that way. Ive started him on a bunch of holistic meds as well. Praying everyone heals from this.

@kmbori
Thank you for the response.. I pray you and your husband do well and never give up the ship.i am going for the 3rd set of chemo this Wednesday and Thursday… I have days when I feel ok but not like my old self… fatigue gets bad at times…no strength in leg muscles. I walk on a cane to make myopic take strides of steps not just shuffle steps… anyway god bless you both for this horrible insidious
disease….pvctom🙏

Has anyone heard of having blood in the Urine with Stage 4 Pancreatic Cancer and if so, what does it mean ?

@suelannon , this can mean a variety of things. Did you report it to your doctor?

@colleenyoung I did but they told me to take him to our Primary Care Doctor. He did not have a fever and did not have any burning while urinating. It lasted several days but he did not tell me right away until it totally filled the basin with blood. That happened twice and then it finally stopped the next day. I just feel that it is connected to the Cancer. He has been very stable for the last year and in the last two months, he is in much more pain and sleeping a lot and he has no appetite. I have reported all of this to his Oncologist at Univ of Penn but I am getting no feedback. I finally asked if they would do another PET Scan and they agreed. It has been 4 Months since he has had any scans. We are going to his Primary Doctor on Tuesday and then go to Penn on Wednesday for the Scan and we will see the Oncologist a couple hours later in the day.
He has been on Palliative Care since he was diagnosed in July 2024 . They did a Pancreatomy
( not sure if that is the correct term ) . They had spent 6 Months doing scans but nothing was showing up. His CA19 was going up every month. He had also lost 50 lbs.
They finally did the surgery to see what was going on. He had a fairly large tumor in the body and tail of the Pancreas and the cancer was in 14 of the 20 Lymph Nodes. Chest Scans also showed many nodules in his lungs. They did a Biopsy and found the Cancer was all through his lungs. So he was already Stage 4.
My husband has had no other treatment at all and he has certainly had his ups and downs but up until 2 Months ago, he only had pain at night when he laid on his side. Now, he has pain in his stomach, abdomen and back all of the time and then he started with the blood in his urine.
I guess we will know more after the scan next week but we both feel that because they put him on Palliative Care, he is just not a priority for them. We both just want to understand what is happening. Scans have shown that several Lymph Nodes are enlarged and there are many more nodules on his lungs . The Oncologist actually told us 4 months ago which was the last time we saw her that my Husband could live for years which would be wonderful
but we are having a hard time believing that now and he is getting very worried and depressed. Can Pancan go into the kidney or the Bladder ? Could that be the cause of the blood in the urine ?

I started with blood in urine last October. Off and on. Everyone trying to figure it out. Had a cystoscopy. Bladder clear.
Two weeks ago the pain got unbearable so went to ER. It was a fairly large kidney stone trying to make its way to my bladder. Pain in stomach and back. They saw the stone with a quick scan. The pain had become intolerable.
You might ask about kidney stones.

@gamaryanne Thank you very much ! I did not think of that but hopefully, that is what it is.