billiruben

hey Jesse,

I am pretty new at this, but my wife did the same thing and her billirubin would not come down after they put the catheder and the external drain. They put in a larger one after a couple of week and it started working… My thought was why didn’t they put in the larger one first.

When my dad became jaundice, his stent was still working. We were told it was the progression of the disease. His biliruben level fluctuated quite a bit. He hit 5’s to 10’s. My dad tried a prescription powder mixed with juice to bind bile and take it out of his system. He couldn’t drink much of it because stomach would get full too fast. Usually when biliruben levels are extremely high, the stent has stopped working. My dad lost a lot of muscle mass too. Margaret has some excellent food ideas to maintain weight while you wait for the biliruben
level to go down. Good luck on continued treatment. My thoughts and prayers will be with you.

When my husband Tom started to loose weight (He was 167 and went down to 105 lbs – skin over bones basically, he is 6ft tall) I did everything I could to encourage him to eat. Started encouraging him to eat 6 -8 very small ‘meals’ a day. Peanut butter is a great source of protein. Apple slices dipped in peanut butter! Crackers w/cream cheese and a small dab of jelly on top! (Yummy)

Boost is also good, but pricey! Your cancer center should have $2.00 off coupons. I know that Walgreen’s runs boost on sale at least once a month. Buy one and get the 2nd one at 1/2 price. Add two $2.00 coupons and you get quite a deal. Your cancer center will often have samples of boost and ensure as well. All you have to do is ask! They routinely give Tom both samples and coupons. When people ask if there is anything they can do to help, ask them to pick up some boost for you. Tom likes the Chocolate the best.

Malts or shakes will help to gain weight. Use Whole milk (not skim or 2% or 1%) is you are loosing weight you need the whole milk. You can also make the malt or shake with Half and Half….more good protein. Add a banana cause bananas are good for you. You can also make the malt or shake with boost rather than milk. Add extra eggs, cheese, milk, half and half to everything that you can when cooking!

Make pancakes or waffles, again using whole milk or half and half. Add an extra egg to the batter. Use real butter rather than margarine. Make home made peanut butter cookies, great for protein. Protein is the key cause if you’re loosing weight protein will help you gain weight, or at least hold your weight steady….

Make home made cream soups! Again using whole milk or half and half. These can be frozen in small portions and heated in the microwave. When Tom asked for soup, with 10 oyster crackers, I’d put 20 oyster crackers in! (he noticed after a week and commented on it…lol) Pretty much I doubled whatever he asked for. If he asked for one poached egg w/1 piece of toast, I either made 2 poached eggs w/1 piece of toast, or 1 poached egg w/2 pieces of toast. Most times he ate whatever I gave him but first he’d preface it with “I can’t eat all that” to which I would answer, “Just eat what you can” and wonder of wonders, he’d eat it all!

Needless to say – it has been hard, but as of today’s date, Tom is gaining weight and is up to 120 pounds. So, it can be done, but as a caretaker, you have to continually be on top of it, you have to encourage, cajole, tease, be prepared to make whatever the CC patient feels like eating that day.

Funny enough, it seemed as if one day Tom would crave something, so I’m make enough for two meals and the next day he would say “Ughh, I can’t eat that”….and yesterday he loved it! Go figure, eh? So I learned that even though one day he would be craving something, it could be that the next day it would turn his stomach. I blame it on the Chemo cause I know that chemo will change a person’s taste. For the longest time even the thought of an egg would make Tom gag….then one day he asked for a poached egg, and ate them every day for three weeks…now he hasn’t asked for a poached egg in weeks!

It’s a tough job, trying to get someone to eat, when everything to them just does not sound good, or smell good or taste good. I know firsthand, but it’s important to find what the CC Patient can tolerate. Boost is good instead of snack if the solid food is too much. It has all the nutrients that the CC patient needs and can even take the place of a meal. Boost Plus is even better, but agin more pricey than the normal Boost.

Hope these suggestions help somewhat.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Have you asked the Doc to prescribe some supplement drinks like Ensure or Boost. These contain minerals and vitamins that Jesse may be lacking due to his lack of appetite. My Dad took 2 or 3 a day after his stent procedures and also after his external drain. They made him feel better and less breathless, which the Doctor thought was due to lack of essential vitamins. They do them in milk or fruit juice. My Dad prefered fruit juice flavours. My Dad did seem to like only certain foods after his stents, soups, tomatoes on toast, fish, noodles, mash potatoes, as he found these easier to digest. He also loved trifles and apple turnovers! not too healthy but it was lovely to see him enjoy them. Little and often may help too and make it easier to digest.

Sending best wishes

Keeping everything crossed for the MRI. I’m not an expert but perhaps if the light treatment works, the tumour may shrink enough for the bile to flow more freely. At the end of the day you need to decide whether the treatment is going to give Jesse a better quality of life, did the Doc discuss this with you?. I know every procedure has it’s risk and it’s something that is hard to decide and only you can make the choice.

How is Jesse at the moment?

My Dads bilirubin never came down but he remained painfree throughout his cc journey.

Best wishes

Andrea

Dear Jesse,

This was why my Dad couldn’t get chemo. It would be too toxic on the liver and do more harm than good. The fact that they are willing to try localised radiation sounds promising. I will keep everything crossed for you both.

Good luck and best wishes

Andrea

jesse….the way understand it is that when bile can’t drain then the chemo also would build up in your Dad’s system and, that of course is toxic. Good luck on Monday with the radiologist. You may just find the answer there.
Good luck and best wishes,
Marion