dukenukem

I cannot stress how important attitude is, and it sounds like your wife has a great one. I lost 34 pounds in six months and regained it in the next eight. Small frequent “grazings” worked best for me in the beginning. It was a long time before I slept through the night – I regularly got up at 0200 and 0600. I am partial to Kellogs’ ToGo but Carnation IB was good, too. Lots of protein bars – I alternated between high protein and high fiber. There are many of them so there are lots of opportunities. Some people have problems with no longer enjoying foods they have loved over the years. Keep looking until you find foods she likes.

Trials require a lot of research to determine eligibility. Depending on her onc and the hospital system, your wife might have better luck if you did preliminary research and presented the onc with options. That’s my plan for when trials seem the best option. IMHO this is my life so I can’t expect the doctor to do something I am not willing to do myself. I am part of my team so this is something I can do. This may sound a little militant, but I don’t want to look back and say, “I wish I had done something else. I just didn’t know.”

Walks, fresh air, being with people, all help attitude. You will frequently see the statement (or very like it), “This cancer sucks!” It does. Say it. Shout it. OK. Now get on with doing everything you can to help your wife. Put on your best face for her. Reading posts, it sometimes seems that this is harder on the caregivers than the patients.

Wow. This post took a strange path. Not at all what I had in mind when I started. Definitely not my normal light-hearted post.

Sam – all you can do is all you can do. You can’t do any more, and you owe it to your wife and yourself not to do one iota less.

Duke

Yeah, but I bet you traded in some 40 year olds for a thirty year old. I hope your insurance company sends you a thank you card for cutting expenses.

I love to sing, but have many stories why I only do it in the shower (and that even backfired on me once).

In eighth grade I was forced to try out for choir – and was rejected.

I sang to my kids almost every night to put them to sleep. I can sing “We Three Kings” in one note – probably one that doesn’t even show up in the score. When they woke up in the middle of the night my wife sent me to sing them to sleep. When I sing it at church, my wife starts to yawn.

The shower thing. I was in a shower in college, singing away. Someone snuck in and recorded me. After I got back to my room, someone knocked on the door to invite me down to a bull session in the RA’s room. A few minutes into it they started the tape. Most embarrassing thing was that I didn’t recognize my voice at first. What are friends for if not to humble you?

Duke

Marion –
Just be slow and steady on the new section, recognizing that it will be a work in progress for a while.

Maybe you could go back to say, the beginning of 2014, to Introductions to look for comments from new users to see if they had trouble finding something or had questions. That should be your target audience for now.

One thing I have noticed is that some Boards seem to get comments from a somewhat limited population even though they are read by many others.

And as I’ve said before, Gavin’s posts on new stuff are tremendous. How do we “advertise” the Board more? When you take time to read them, they provide a wealth of new ideas and options. Do people get overwhelmed before they get that far down in the list of Boards?

If someone out there has experience with web site design, maybe they can chime in with the philosophies/psychology of site design and give Rick some ideas. This is the only collection of Boards I participate in so I have no specifics in mind.

Duke

I’m trying to get approval from the hospital to put out cards, but seem to have run into someone with a severe case of lack of interest. Plus, I’ll contact my PCP to see if he is interested.

Something to consider adding to the new section would be a more elaborate description of the other sections, plus the Search function. This site can be overwhelming to someone wandering through it without a clear idea of what they might find and the best places to look.

Maybe add a description of the various designations, e.g., “moderator”.

Add a small vocabulary section. intrahepatic, extrahepatic, Klatskin’s, cyber knife, resection,, metastasis, etc.

Duke

From Gavin: (Who finds the greatest stuff. Now I just need a medical degree to understand it.) I will find the actual link and post it next.

Abstract
PURPOSE OF REVIEW:

Cholangiocarcinoma is a rare tumour with dismal prognosis. Only radical resection offers a chance for cure with reported survivals ranging from 25 to 45% at 5 years. Considering the low rate of resectability and lack of efficacy of other treatments, liver transplantation has emerged as a reasonable approach to cure selective patients with unresectable diseases. The use of liver transplantation, however, is associated with the inherent risk of early tumour recurrence due to the need for immunosuppression and the poor survival rate. This review will focus on the role of liver transplantation in treating patients with cholangiocellular cancer.

RECENT FINDINGS:

The indication of liver transplantation for cholangiocarcinoma has evolved over time moving from an absolute to a relative contraindication until eventually becoming the best indication for a small group of patients presenting with unresectable perihilar cholangiocarcinoma, when associated with a neoadjuvant chemoradiotherapy. In contrast, the indication of liver transplantation for intrahepatic cholangiocarcinoma is far from being established and should be offered only under protocol, mainly for small tumours in the setting of cirrhosis.

SUMMARY:

The poor outcome of cholangiocarcinoma, irrespective of the therapy, justifies the search for novel approaches. Only selective patients with perihilar cholangiocarcinoma subjected to a neoadjuvant protocol may qualify for liver transplantation.

PMID:
24811436
[PubMed – in process]

Not too much muffled. Biggest problem seems to be that I have to listen carefully which takes some of the enjoyment out, espcially when listening to music. I’m listening rather than experiencing.

Hearing did not seem to get any worse. But, there could have been a slight gradual degradation so I won’t say it didn’t happen. Some people are harder to understand and some situations are harder to hear in (background noise, etc.). With the hearing aids, some sounds are just plain irritating, example, folding a map or scraping a plate.

Duke

I’m fortunate to not need a port. There were times that I thought a port would be a wonderful device, but, reading your posts (and others), I’m not so sure now. There is a lot more to it than I ever thought.

As everyone else has said, you are strong and will get through this. You have to. There is no “what’s behind Door #2” option. Therefore you will. QED.

Would it help to imagine us with you, sharing the anxiety and pain? It wouldn’t take more than three or four of us to dilute it to a manageable level. We’ll be there for you.

Duke