Things going from great to horrible seemingly overnight
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Hello, I’m Kate, and my husband Jerald had a Whipple May 7. We have opted for chemoradiation treatment, with continuous 5fu infusion and radiation 5x/week. We haven’t yet met the radiologist–that’s next Thursday. We are wondering how to expect Jerald to feel during his treatment, and whether he needs to avoid crowds while his immune system is compromised. Everything we’ve read says that chemo alone is not helpful, but that radiation is effective in the region of the surgery. We just wanted to take every opportunity to knock out all the seeds if we can. He feels very well right now, and we sure hope he can continue to feel well. ‘Sounds a bit optimistic, doesn’t it?
Fatherson……. I’m sorry to hear about your Father’s condition. Just by reading your post tells me he has been having a very rough time. The explanations you were given sounds logical from what I have heard and seen. Being unresectable to begin with having double stents which do get clogged up over time. The ongoing fevers and juandice on a monthly basis does relate to bile blockage. Also it is known that even with stents and external drain it is possible not to get enough drainage to lower the bilirum due to disease progression of the liver itself. If there is cirrhosis involved it is possible there is not sufficient varices secreting in to the ducts themselves and thats why his counts are staying up. I know that all the CT Scans I have had done (many); they say little to no change or progression. But if you look at the size of tumors way back at the begining and compare to the present one you will certainly see the difference. The radiologist compares present to last scan and that’s why that terminology is flowing around. You ask have the they lied to you, painted a rosie picture I would hope not. Oncologist in my experiences are on a different plane emotionally; they have to be able to give hope as long as they possibally can to their patients but also be able to tell it like it is when they have done all they can do. The Bottom line is it sounds as though your Father’s liver is in really rough shape and your doctor may not be able to do anything else until things calm down(swelling and infection) and possibally even after that is questionable. What does your father say? What does he want to do? Does he feel strong enough to press on with more procedures? Second opinions are always a good Idea if you have any doubt. There are surgeons that will try something new or different than the others. Review the big picture and if your father wants get that 2nd , or 3rd opinon. I’m not sure if this post is of any help or compounded your unfortunate situation. This disease is terrible and tough choices have to be made. I certainly wish your father the best and pray to God that he gives you the strength to deal with this situation. Continue being the loving and caring person you are. Your Father can certainly be proud.
Jeff G.
Are there any updates on your Father? My mom is having some of the same issues and I was just wondering. After being in the hospital a week to have stents put in they were finally able to do it yesterday 6-6, she was having problems with her blood clotting and it took a week for them to figure out what to give her to make it clot. She is also having the swelling problem now that she’s been in the hospital her Dr say’s it’s due to all the fluids they are pumping in her and not getting the exercise she would if she was at home. They were able to put stents in and didn’t have to leave any drainage tubes. Not sure yet when she will get to go home the Dr usually comes in around 11am so we are waiting to see. Chemo was put off last week and this week due to being in the hospital. She won
My father was diagnosed with intrahepatic cholangiocarcinoma in January of 2006 (16 months ago). Resection was attemped (determined to be non-resectable) and during that time, 2 metallic biliary stents (right and left) and an external biliary drainage catheter were installed.
Intensive 7 week radiation and chemotherapy were conducted beginning approximately May 2006. The radiation consisted of 5 day per week treatments and chemo was 5FU (I believe) administered by a carry-around pack that was regularly infused via PICC line.
Around Aug/Sept 2006, the external biliary drainage was deemed unnecessary and was removed. I believe another biliary stent was placed in the right posterior hepatic duct.
Regular CT/MRI were taken every 8-12 weeks through beginning of 2007 with the feedback being “little change” or “the scans don’t show much”. Additionally, blood tests showed bilirubin levels at 1 to 1.5 and feedback that liver tests “were good.”
CT/MRI in April 2007 again brought comments of things look good, and the oncologist seemed pleasantly surprised by the lack of disease progression. Bilirubin at this time did increase moderately to 2.2. Also, in hindsight, my father had very mild fevers (101 or below) on an irregular basis (maybe once a month) during the first part of this year.
In middle of May (week after Mother’s day), my father had fever off and on for 3 days and noticeable jaundice. He was admitted to hospital and bilirubin was determined to be in the 10 range. This was a surprise to all of us since things had been going so well (as recently as April, doctors were saying things good for now, no need to do anything). The word we received from liver specialist was that probably just some “sludge” in the biliary stents and that either: a) could be removed; b) additional stent placed to improve flow or c) if neither a or b, then might have to go to the external drain again. As such, we were not worried.
ERCP performed on Friday 5/18 and we were told “things went very well.” My father stayed in hospital for 3 more days. Bilirubin level was pretty much flat, but went up a little after the ERCP (about 12). Also, he started having some swelling of hands/fee and bloating of abdominal region. Discharged with: a) anti-infection medication and eventually b) anti-water retention meds. Also, we were told that it was natural for bilirubin levels to stay up for awhile but should come down “in a couple weeks.”
We have been back for 2 blood tests since discharge. First test (5/24) showed bilirubin coming down slightly to 11.6. We visited the liver specialist on 5/24. He took some fluid from my father’s abdomen and we were told that it did not show signs of tumor (I think that’s what he said). Again, he reiterated that bilirubin should continue to come down.
However, second test today (5/29) showed bilirubin elevation to 13.4. Also, Alkaline Phosphotase at 169, AST at 171, and ALT at 75. I grew concerned and emailed liver specialist this evening ahead of our scheduled appointment with him on Friday 6/1. To my huge surprise and fear, the response I received seemed very bleak:
“I am glad that the water retention is resolving, that is why your father is losing weight. He should complete the course of antibiotics and stop. In regards the bilirubin, I would leave it alone. The reason why it is not coming down is because he does not have to many patent bile ducts due to tumor invasion and underlying cirrhosis. I do not recommend another ERCP or a percutaneous drain, like he had before. These procedures will not improve the bilirubin and could cause complications and discomfort, and, most importantly, will not improve his clinical condition. For now, I would continue with the diuretics until the swelling goes away.”
I have no idea how things went so bad over the last few days or weeks. Are we being lied to or just constantly being given a rosy picture? Are our doctors giving up? I am considering a second opinion and emailed Dr. Simon Lo at Cedars.
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