Catheter installed but bilirubin keeps rising
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Yes, my awake hours have been altered by so much bedrest. Wanted to add something to the acupuncture story – when I saw the doc I could barely take half a breath because of the pain from moving my diaphragm. After one treatment I was able to take full breaths with almost no pain, and that has lasted from Thursday through he weekend. The relief was immediate. Something to think about for those thinking of alternative medicine. I’ll start a a post in the alternative section when I get more experience.
Better is good Michael!! Hope the itching continues to improve. Dad was also told to drink Tomato juice to help his jaundice clear, he added a little salt and pepper to it and enjoyed it. He also started and ended the day with fresh lemon juice in warm water, again another remedy to help bile flow.
Best wishes coming your way.
Andrea
You bet it is. Something is working. I am thrilled to hear it and am hoping for each day to become better yet. Hey, aren
Hi marions! Itching is less, yes! Not gone, but less. I doubt that’s from the herbals – only a day and a half – but better is good!
Michael…..Still chuckling over your remarks regarding the liver and your regret of not having indulged more in your youth. If only we knew in advance?
Acupuncture in my opinion is underrated in this country. Not that I except it to produce miracles however, I believe it has a place in healthcare. I am hoping for the Chinese Herbs to do the trick for you also. Still itching as much as before?
All my best wishes,
MarionWent to Dr. Zhao in Sarasota, really nice guy. Turns out he was a liver specialist for five years in conventional medicine. He’s going to work on making me feel better while the tumors are being fought by Moffitt. Got acupuncture, which made me feel really good for the rest of the day, but then the next day I didn’t want to get out of bed. I probably overdid it on Weds and Thurs with too much activity. Also started me on an herbal supplement to pull the bilirubin and toxins out – “Ai Kans”. He mentioned indigo in particular as one of the herbs in the supplement that helps remove bilirubin. I’m also starting on a liquid oral preparation designed to fight cancer – “Bing da ling”. This is interesting, I read about Bing da ling before I started Therasphere. It was shown in a clinical trial to be effective shrinking tumors in concert with certain chemo drugs for certain types of cancer. CC wasn’t one of the types listed, and I’m only on radiation so far, so I’d forgotten about it. Hope it works.
Regarding the bilirubin rise – he explained that when the liver is as damaged as mine (cirrhosis from the tumor), the bilirubin will leak from many places because the scarring makes it hard for it to flow into the ducts.
Hi Michael sounds good to me! And for those who don’t know, you did not mispell Pasta…..I understaood Basta very well! Let us know what the Chinese Doctor says and keep up your great work…that is to be pain free and to take it easy on the porcelin God!!!
Thank you all for your suggestions! As I’d hoped the tube is becoming less painful though I did pick up a surface infection – right at the insertion point so of course that will take time to heal and stop hurting. I am drinking as much water and green tea as I can take, I have to cut back when my cranky bowels yell, “Basta!”. My GI tract takes a long time to recover from whatever sedation it is that they use. Who woulda thunk making a poop could be so satisfying? All in all feeling better though still yellow – I take comfort in knowing that inflammation might be a cause because I know for sure I’ve got that!
My takeaway from this whole thing so far – if I’d known this was going to happen to my liver I would have done a lot more drinking in my youth.
Going to see a traditional Chinese doctor today who has lots of experience with cancer patients and confers with the docs at Moffitt, I’m hoping to get some other angles on cause and treatment.
This is a great resource! Thank you for your support.
MichaelDear Walking the Path,
Every time my Dad had a stent change I know it took a few weeks for the bile level to decrease, sometimes it went higher and sometimes it stayed static then dropped. We were told inflammation of the ducts could cause this and once the inflammation had gone down the bile would flow. My Dad was told to drink, drink and drink some more! to flush it out of his system.
Best wishes being sent your way
Andrea
walkingthepath…I am so sorry to hear of your itching problems. In addition to Lainy’s response I thought to include a few links talking about this often complained about problem. Hopefully something will work for you. But don’t hesitate to call your physician as there is medication that can be given also.
Best of luck,
Marion
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1315
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=296
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=21904
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6172Dear WalkingthePath, I am so sorry about your turn of events. I don’t know what is going on but I do know it bothered me that your GI/ONC could not see you until next week with this going on! When my husband itched we used a cream called Sarna and it can be bought at Walgreen’s /CVS. Also ice bags seems to help a bit or a cool shower. I know that itching is just terrible. I am sorry but I am upset about the doc. It may be a good time to get in somewhere for a second opinion. I hope you can get some relief and keep us posted.
Had a good one month followup Sep 8th of the therasphere treatment showing decreased blood flow to the tumor. A month later my urine went dark and ultrasound showed the left bile duct obstructed. Total bilirubin Oct 3 was 5.3 mg/dl, Alk Phos 368 U/L, AST (SGOT) 309, ALT (SGPT) 524. Docs installed a catheter (size
which seemed to work for a day, then clogged so I had to put on a bag. The bag filled off-and-on all week with long periods of nothing making me hope the catheter had cleared, but yesterday Oct 10 I went in and it was still clogged so they changed the catheter to a 10. The last tube wasn’t bad. This one hurts so much that oxycodone barely dulls it. Because the abdomen is traumatized, every time I change position the muscles clench around the tube and the pain knocks me down. Hope that once the duct relaxes to the new size it will be better. Weird thing is even with a week of emptying a total about a liter of bile (and probably some upper GI fluids) the bilirubin has shot up to 13.3 mg/dl. Alk Phosphatase 390, AST 390, ALT 172, Conjugated bilirubin 8.1 mg/dl. I’ve turned yellow, everything itches, energy totally gone. I talked to the doc who did the tube, who is my radiology doc, and asked if something else could be causing the rise in bilirubin, he referred me back to my lead GI/ONC. Can’t see him until next week. So, what else could be going on here? Could I just not be patient enough for the numbers to come down? Patience is difficult with the itching.
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