July 3, 2016 at 3:27 am #92619
googily…..happy to know that appetite has increased.
All opioids cause constipation. You may want to discuss with the physician: some say the best strategy is to anticipate the side effect by taking a stool softener and a laxative as soon as you start taking the pain reliever. But you must use your judgment to keep things moving.
To stimulate the bowels docusate (Colace, other brands) and laxatives like bisacodyl (Dulcolax) or senna may work well. If this doesn’t work a powder consisting of polyethylene glycol beads (Miralax, or other brands) lactulose, Milk of Magnesia, or magnesium citrate have been suggested on this site.
As far as I know (but verify with healthcare worker) that bulking agents like psyllium (Metamucil, other brands) should be avoided.
Wishing you an uneventful 4th of July
MarionJuly 2, 2016 at 4:33 pm #92618
Thanks, Lainy and Marion. We are waiting to be seen in about 10 days by the multidisciplinary liver team at Hopkins, which has all of the specialties Marion listed–it wasn’t anyone on that team, but was a liver specialist at a hospital in DC, who made the initial comments that could have been perhaps framed with a touch more grace (and she did at least say that an interventional radiologist may have a different opinion, as I mentioned up thread).
We will then get a second opinion at SK, and/or anywhere else–right now we don’t technically have a first opinion, other than the biopsy saying it’s adenocarcinoma in the liver, probably coming from somewhere in the upper GI tract, though the MRI listed peripheral CC as the #1 differential diagnosis.
Thanks also for the suggestions on the food–his appetite has been better the past few days, and he’s now going to start the pain meds which will hopefully make it easier to take in more food (even if the meds mess with his appetite, I will be pressing him to eat small amounts ever few hours).
Thanks so much for your replies, I really appreciate it. We will keep on keeping on until the Hopkins team appointment, at which point I hope all sorts of things will start happening on multiple tracks.July 2, 2016 at 4:31 am #92617lainyParticipant
Dear JD, welcome to our remarkable family but sorry you had to find us. Yes, we are huge believers in 2nd and 3rd opinions as different ONCs see things differently. I know how you feel, like you have been hit in the stomach with a baseball bat. I am surprised that such a dire opinion was given in the way it was. Even if it takes 2 weeks, if you can get into SK go for it. Let them know you will go on a wait list if need be to get in earlier. If your husband is not feeling like eating we suggest grazing all day with small bits rather than sitting down to a major meal which can turn them off without eating at all. I used to make a lot of comfort foods like homemade chicken soup, omelets, buttered noodles with some diced chicken thrown in. You might also try a nutritional drink. Teddy like the Carnation Instant Breakfast the best especially the vanilla with a banana blended in. The shake can take the place of a meal or can be given with a meal. It has all the needed nutrients. Below is a site you might find helpful and please do keep us updated as we truly care.July 2, 2016 at 3:45 am #92616
googily…….you are welcome. It is my personal opinion that this cancer should be evaluated by a tumor board – not any tumor board – but one comprised of a surgical oncologist, interventional radiologist, gastroenterologist, pathologist and oncologist in a center treating a high volume cholangiocarcinoma patients. Not necessarily are these physicians smarter, rather they have tons of invaluable experience. This is particularly true for those seeking 2nd professional opinions.
I so much understand your feeling of being “smacked” with bad news, but I have learned that words such as “may not” or “unlikely to” don’t have any meaning until replaced with a clear and scientific explanation.
Hang in there and allow yourself a few minutes – each day – to breath in the air and let you mind escape from all the worries.
MarionJuly 1, 2016 at 7:51 pm #92615
Thanks so much for the speedy reply, Marion. And I didn’t want to leave the impression that I was shocked that “inoperable” was a possibility, since I’ve more or less accepted that–I just got sort of smacked when she then added that “localized treatment” may not be possible either, because I was at least starting to hope that TACE or some of the other similar procedures might be possible (and she did say that an interventional radiologist may have a different opinion on that). I guess the “innumerable” lesions might be the reason for that. I have found unfortunately on this journey of the past few weeks that if there is a chance between a bad prognosis and a less-bad prognosis, my husband’s body so far as gone with “bad” each time.
You are right about preparing for a second opinion, which we are ready to do (probably SK).
And in the meantime we will wait, and try to get some more food into him and keep him feeling as good as he can.
Thanks again, and I will be here continuing to read.July 1, 2016 at 7:35 pm #92614
googily…..a warm welcome to you. No reason to feel uncomfortable about introducing yourself, this is the place to do so, glad you are here.
You are bound to be anxious, much has been thrown at you and a clear diagnosis is yet to be determined. Hang in there, dear googily, you will receive the answer real soon. The fact that your husband feels a bit than the previous days/weeks is reassuring and should help you get through the next 10 days.
In the meantime, I would consider a physician/center for a second opinion with a physician/center treating a high volume of cholangiocarcinoma patients. Not that you need to make contact as of yet, but at least try to determine the next place you want to reach out to. Make sure to gather all medical information, including scan blood test results, physician reports, etc. and have it on hand.
Based on the information given so far, surgery may not be an option, nevertheless you would want this confirmed by an additional physician highly experienced with biliary tract surgery.
Hope this helped a bit and you are able to enjoy the upcoming Holiday weekend.
MarionJuly 1, 2016 at 7:02 pm #12575
I’ve been reading everything here voraciously for the past week, and hate to do an introduction that’s also somewhat of a plea, but here it is.
My husband is 54, and after a CT and MRI that said nothing conclusively, had a liver biopsy that came back a week ago as adenocarcinoma, with the comments saying only that the testing on the sample point toward a primary in the upper gi tract or pancreaticobiliary.
The liver cancer multidisciplinary team at Hopkins has put him on the clinic schedule, but thanks to the holiday weekend (no clinic next week) it’s still more than 10 days away. The liver specialist at the Hopkins-owned hospital in DC says the signs point to CC (metastatic ICC being listed as a differential diagnosis on a second read of the MRI by a Hopkins radiologist along with metastases from an unknown primary). He has a 8 cm mass in his liver along with what’s described as “innumerable” masses in both lobes. There’s also signs of swollen lymph nodes near the porta hepatis. But no other red flags on the imaging–no biliary dilitation, veins are “patent,” nothing in the peritoneum, etc.
He has no jaundice, no itching–his main issues are abdominal pain and bloating, sometimes radiating to his back. The liver specialist gave him rX for plenty of pain meds of all powers, but he hasn’t dipped into them much. He’s in fact felt better the past few days, going out for walks each day. He’s not eating a lot, though. His liver function is mostly normal, bilirubin is fine, enzymes just now starting to drift above normal range.
Our biggest concern right now is waiting another 10 days for him to be seen. Hopkins is “just up the road,” and of course is well regarded, so we wanted to start there, but the waiting is going to drive us insane. And the liver specialist has not exactly been encouraging, saying that she doubts there can be surgery or even “localized treatment.” But we do know that there were actual discussions amongst Hopkins doctors as to where he should be seen (liver vs. pancreas), plus a Hopkins oncologist requested further blood work that we’ve done, so I guess we’re trying to hope that if time were truly of the essence they’d have said so? And that even now (given that it’s late Friday afternoon) if we were to try to go somewhere else it’s unlikely we’d be seen next week?
The combination of what I have read in general for inoperable ICC along with the local liver specialist’s lack of any sort of positive vibe has me increasingly desperate.
Thoughts? If you want to move this out of Intros & into general discussions, that’s fine.
Thanks for all everyone here is doing and sharing.
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