Officially just reached 3 month post diagnosis with stage IV terminal pancreatic cancer. As you may recall, the average survival for those with out chemo is 1-6 months. I did get one dose of chemo to see if it was tolerable, and found it not to be. I reasoned I could double my life span to one year, but realized the quality of that life was going to be pretty miserable. So opted for a shorter life span with many more quality days I could spend with loved ones. I'll try and drop in some pictures from the last 3 months to document those wonderful days.
My experience with PDA (Pancreatic ductal adenocarcinoma) may be or not be typical. I wish I could say, but there is just not enough that has been shared. Which is one of the reasons I am documenting my experience. I have had many more good days than bad, but am always dealing with the pain. This is where Hospice come in to keep your pain at bay and they do an excellent job at this. Additionally they treat some of the common PDA symptoms like nausea and diarrhea. I am leaving off constipation as it has not been an issue for me. Again your experience could differ. 93% of PC patients suffer from the same call line, but there are many variables that could make your experience different from mine.
Mine started in the head of the pancreas, quickly spreading through both lobes of the liver and into the lymph nodes. It is my understanding that if yours started in the tail of you pancreas you likely suffered from back pain as well. This is because the tail of the pancreas puts pressure on your spinal column.
I'll tell you the meds I have found effective in controlling the pain and other symptoms. Diarrhea can really ruin your day and evenings. So controlling that has been critical. Food just passes right through so I take a pancreatic enzyme called Pancreaz with every meal. I then take a med called Lomotil which slows down the GI contractions. I also eat small amounts of food at one time. Getting of track with any of these will wreak havoc. Another common problem with PC is a lack of appetite. There are different meds out there to increase your appetite including marijuana. However, I have found that 2mg of dexamethasone, a steroid works effectively. Eating just a little too much will upset this balance at this stage.
For pain it is mainly oxycodone and morphine. They will start you out at low doses and slowly ramp you up as the disease progresses and becomes more painful. A pain of 2-3 is tolerable for me, but having had a 8-9, I can assure you want to stay as far from this as possible. I was started on 5 mg of oxycodone and 15mg of extended relief morphine. The idea is to control the pain with morphine and use oxycodone for break through pain. I am now on 60mg morphine 3 time a day and oxy of 20mg. Usually my pain levels are a 1-3 with this regiment.
I feel I might be different (lucky) in the following ways. Despite having the cancer in my liver, I have had no jaundice or fluid build up in the abdomen known as ascites. It can also spread to your bones which is very painful. I have seen no clear signs of this, although I do experience muscle pain in my legs and frequent superficial plebitis. Another unfortunate destination is the brain. Because Hospice is just palliative care you do not get scans for its spread. But I have noticed how badly my spelling and grammar have become and a general decrease in my intellectual capacity and recollection. As long as I feel I can make some sense and be of some help I will continue with these blogs.
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