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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 1 hour ago | Replies (1503)Comment receiving replies
Thank you for the information. A little more background on me. I have been on Creon for 3 months. I always had trouble with constipation and after a colonoscopy and Eno I started having steatorrhea last December. Gastro wanted to do another colonoscopy and I was sure this was upper not lower. Finally had a stool sample result with enzymes less than 50. Less than 200 was listed as being severe. My diabetes has been more difficult, and I have been getting weaker. Lots of muscle loss and stools have been floating (from fat) for about a year. I have lost about 30 lbs. without trying. Actually, I have been eating more calories trying to stop muscle loss. After going on Creon 3 months ago I have been pressing my gastro to check my pancreas. No luck. When I was in the hospital last week my gastro's partner came by and she was still insistent that I was just old (67) and my pancreas stopped making enzymes from aging. So, all the indications have been there but were not acted on even with repeated requests by me. And yes, I will be changing gastroenterologist.
There is a Cancer Center of excellence in KC with KU med. I have been up there to KU med on another medical problem. KU does even have a hospital down in Wichita near where I live. I am really not wanting to go to KC. It is a long 3-hour drive and lots of traffic when you get close. Really a full 8 hours driving time from my house to the doctor's office round trip. I am not sure that I will be able to make those drives in my current health. Drives across town are even difficult for me. If there is some outreach at the KU medical center in Wichita I will see if I can get on with them. Not sure any hospital near me has a GI recovery floor. Maybe a part of a floor. Last week at the hospital the ER had hall beds. Not enough rooms in the ER so people were parked out in the hall. Staff is really over worked. I was put on the Cardio floor when I was admitted so you really get only what is available. The staff were really great though. This was not at the KU hospital though and one thing I have to ask the surgeon next week. I have reached out and have information that this surgeon is very good. Most likely the best in town for this.
Again, I do not and will not pile up a bunch of medical debt for treatment of a fatal decease with a short survival time. I will call KU Monday to get some information from them. Mainly if they accept the Medicare approved amount. And what if any non-covered charges there are. That is also on my list for my local surgeon. Surviving the surgery is another thing that I am concerned about. I'd like to find out about diet supplements. I am still losing muscle and need something to help the Creaon with the fat. The Creon helps but does not solve the problem and I still have to watch my fat intake and limit it. Seems I need something other than just Creon. I am not getting what I need from fat, and I think that will make healing and recovery much more difficult. Most likely a longer hospital stay due to slow healing.
Thing is that I cannot wait long. If the cancer spreads, then there is very little to do and even less survival time. I cannot have an MRI. At least the hospital I was at refused to do one. So, anything going forward will have to be done without an MRI. I will ask what my options are other than surgery. As well as if I have surgery if they can correct things so I can have an MRI.
Thank you for the really good information.
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Some update. Meet with Dr. Ahmad again. I was in better shape to ask questions. He advised my cancer was stage 2-3. Not 4 as they did the second CT with full dye to look for other cancer and found none. Said that PET will be done after surgery. Or maybe after Chemo. As there will be no tumor radiation will not be done. The brush biopsy of the duct where the tumor was pressing causing the blockage was not conclusive. There were some abnormal cells but no cancer cells. Doc said no need for any more test we need to get the tumor out. Cancer blood markers were 1500-1600 and very high. Tumor imaging was consistent with cancer. My 1/2 sister had breast cancer and they did chemo and radiation to kill the tumor before surgery. Seems some places still do this with pancreatic cancer, but a lot take the surgery first and as fast as possible as the cancer is very aggressive. My health is such that I will most likely not qualify for a trial. I researched this doctor, and he is very good and most likely my best option locally. And I have an oncologist picked out that is very good also. I have not been called yet to schedule the surgery. Most likely my cardiologist is dragging this out a bit. Dr. Ahmad said he will attempt the Whipple with laparoscopy but scar tissue from a prior abdominal surgery may require that he open me up again for the Whipple. He said around 4 hrs. for the surgery. I will have a drain and lymph nodes will be removed and tested as will the tumor in preparation for chemo. A week to 10-day hospital stay. I was told I would be permitted to eat anything I wanted up to midnight before the surgery. My gastro is out on vacation as is my GP doctor. The gastro office did call to try to schedule another endoscopy with the ultrasound probe and biopsy. I explained I meet with the surgeon and that he wanted to proceed with surgery without any other testing or procedures. I guess he does not want the tumor poked any more than it has been already to keep it from spreading. I still have no follow-up appointment with my gastro doctor and am waiting on a call back. Next week I will see my GP doctor for follow-up from hospital stay. The tumor pushed closed the bile and enzyme duct where they meet in the head of the pancreas. This caused my steatorrhea starting last December and over time I used all my vitamin K. I am on warfarin for blood clots and with no vitamin K my blood went supper thin. Normal is 1. My target is 2-3. I was at 9 INR. My GP doc manages my INR and put me in the hospital. Hospital doc did blood work and found Bilirubin at 12. Normal is also 1. Ultrasound showed a problem with the ducts in my liver being bowed out. And I was yellow with jaundice. Gastro finally placed a stint to open the duct to the liver. Pancreas duct is blocked by that stint. That will be removed with the Whipple surgery. I'd like to ask my gastro about my Creon. It is not working well to digest fat. It helps a lot but still has a way to go and I want to get it worked out to help me heal from the Whipple surgery and even afterwards.
The bad is I want to have a lot done before the surgery in case I don't make it. I have been going through stuff and throwing a lot of it away. I have tried to get my sons to help going through my collectables to pick what they would want and then go and sell the rest. I most likely won't be able to enjoy having them much longer and after surgery there will be Chemo. Doctor said in about a year my quality of life would return. It's the in-between that I am worried about. Not sure I will make it. The boys can't seem to face the fact that I will not live forever. And I think the reason they are waiting to do the PET scan is that it may have already spread. The PET scan would show it and the surgeon would not get to make any money cutting on me. I'd get a second opinion if time permitted. Just keeping my fingers crossed and hope for the best. I am single and have my son's names on my house, bank accounts, and cars. But there are still a lot of things to go through. I have my cremation paid for also. I found an MRI that was done of my whole spine so the hospital just did not want to do one for me. At least I have it now to show I can have an MRI of my body.
A quick question I did not ask the surgeon. I read that to expect to need 3 units of blood for this surgery. Is that true for robotic as well as being opened up or just if they need to open me up? Any advice on how to get my sons to use what good time I have left to get things ready?