Jaundice
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hello i have been prescribed “ciprofloxacin” to keep my stent clean this is my second day using these? Just wanted you to know. Cheers.
Dear Positivity,
I am real sorry to hear the news about the hospice and the tumour covering the stent now. And yes, you are right in that this is not good news to hear. I know from experience after hearing that with my dad that it was tough to take in. I so hope that hospice will be able to get your mum most comfortable and I know again from my dads experiences that they did an excellent job in keeping him comfortable. Nothing was too much trouble for them and I hope for the same for your mum. Please keep us updated on things and know that we are all here for you.
Hugs,
Gavin
Hi Kate,
Yes, my dad was on Ursodeoxycholic acid after he had his metal stent placed and was going through his PDT treatment. As to the success or not with the acid I could not say either way. He never had stent changes as his stent was metal and not the plastic one that needs changed often. Here is a link that may be of interest to you –
https://bnf.nice.org.uk/drug/ursodeoxycholic-acid.html
These are official NICE guidelines for use of this in the UK and as to whether it is approved by the FDA in the USA I am not sure. Maybe others in the USA will be able to chime in on this?
My best to you,
Gavin
Positivity,
I’m so very sorry for this recent turn of events. Hopefully they can find some way to make your Mom comfortable.
My thoughts and prayers are with you.
Molly
Stents are supposed to help but at the same time those Ercps are tough! Now I find out the tumor is covering more area and this is the third stent replacement in 5 weeks! No treatment will work and it’s hospice! The news is never good with CC that’s why it’s amazing for people who get some relief even for a short time. Who has perihilar CC?
Has anyone heard of Ursodeoxycholic Acid being used to keep the stents infection free? I was on the UK site and the moderator asked if my husband had been prescribed the above? We are struggling with stent operations every 3-4 weeks because of infection. Curious if this acid makes a difference or not and if it is even cleared by the FDA here?
My mother battled the stent thing non stop. I couldn’t guess how many times she had them replaced. She had ERCPs as well external drains put in.
From my point of view based on what I saw, the stenting either works really well or it doesn’t but the middle ground where “it’s kind of working” is purgatory. If it doesn’t seem like it’s not doing much then it’s probably not working that well. You know if it worked well within 24 – 48 hours because they feel so much better. They have a lot more energy and personality.
If the stent works the bilirubin should drop quickly and stay there until it stops working. It’s a pretty simple concept – create a bypass ‘pipe’ to get the bilirubin out of your system, and if the numbers aren’t dropping then it’s not out of your system and the ‘piping’ isn’t working ideally.
Conversely, you know when the drains and stents are no longer working. It’s fairly immediate because the bilirubin is flooding their system again.
The doctors my mother had in this area I believe were top notch, at the same time I do not believe the success rate in placing stents is nearly as high as they proclaim it to be. Again, because when it worked there was no doubt it was working. It just didn’t happen that often.
Joe
Gavin,
I just used the generic anti-itch cream from Wal-Mart. It’s 1% Hydrocortisone, with aloe. I think the new Aspercreme/Lidicaine lotion would also work, but its more expensive.
I hope you can find it there.
Molly
Thanks for your response! She had to take Benadryl for the severe itching. Also, after an ERCP about two weeks ago which relieved the bilirubin from a 23 to an 8, has gone back up to an 18! We will again see the GI doctor on how to relieve the jaundice and the awful symptoms. I would hate for there to be a discussion of a port to relieve the bile, but I will find out soon. I can’t imagine the plastic stents getting clogged in only two weeks! The GI doctor had cleared the sludge two weeks ago. This is a never ending battle with this condition. Amazing for all of you who have the stamina as family members and patients to face and fight this as it is exhausting. Again, she is not receiving chemotherapy, as all of us know it is not the best treatment and can make certain patients worse. My hope is to never have gem/cis as the standard of care. Just my opinion, I know it has helped some patients on the board, but there are others also that it didn’t help.
Hi Molly,
Is the anti itch cream you mention called Sarna? Lainy used to talk about it a lot and said she got it for Teddy at Walgreens and it worked well for him. She talked about it a few times here on the site over the years and recommended it on the boards many times to people with jaundice. But it is not available in the UK but is in the US.
Thanks,
Gavin
Hi Positivity,
Mayo told me to get a metal stent put in after my aborted Whipple operation (because of mets). The ONC’s there said to get it before I started chemo. Before this I was having the same kind of problems as your Mom, with numerous ercp’s due to clogged stents, and having to have them replaced every 6-8 weeks.
My stent is in the bile duct, and my bilirubin has been very low ever since it was put in. I have an “expanding stent” that expands once its in place, and then the tissue grows into it, so the chance of migration goes down after a few days. I understand they may have to be periodically cleaned out, usually after 7-8 months, but I have yet to have that problem and its been over a year.
It is a permanent stent, but I believe if I ever qualified for a Whipple, it would come out because it is in the part of the bile duct that they would have taken out. (I’ll ask the surgeon this at my consult on the 21st)
No one mentioned metal vs plastic based on prognosis or life expectancy, but it does kind of make sense if no surgery is to be performed, to eliminate the need for a procedure to replace every 3 months, especially during chemo.
Lastly, if I remember right, anti-itch cream did help with the itching. Seems it would settle in my feet (and there is a reason for that, I just can’t remember what it is), but the cream did help take the itch away.
The only thing I would do differently, is to make sure the Dr. knows I am only agreeing to the placement of a bile duct stent. If they feel other stents are needed, they should abort and just put in a plastic stent. It was his wrong assumptions (and, sorry, massive ego that told him he is “never wrong”) that turned this whole thing into a huge problem. BUT, by creating the blockage with the stent in the duodenum, I went down to 89lbs, which led me to the feeding tube, that now has me up 15lbs (to my normal weight), and the ONC at Mayo two weeks ago told me I looked “perfectly healthy”, and I do. Good nutrition makes a difference.
Good luck to you and your Mom,
Molly
Hi Positivity,
I am sorry to hear of the troubles that your mum is having with her stents and stuff that comes with it, and I hope that she can get some relief from that and the jaundice as well. I will try and answer some questions for you as best as I can.
My dad also had a stent placed for his jaundice upon diagnosis and it was a metal one. His CC was deemed inoperable at diagnosis so they went with the metal one and not the plastic one. As I understand it, at least back then, they went with the metal one as once it was in it would have ruled out any surgery and my dad was not a candidate for surgery anyway and the metal one is seen as permanent. It can last around a year or so before clogging can become an issue and with the plastic one it is around 3 months or so hence the need to keep replacing the plastic ones unfortunately. The metal ones can be cleaned out now I think and I know that someone here who’s dad had a metal one also had a small plastic one put in the end of it once it started clogging as well to help keep it clear. Andie it was.
I know that these stent replacements will be a pain in the backside for your mum, but they really are needed to keep the ducts free so that the bile can keep flowing out. The way to look at the jaundice IMO is that it will take time for it to build up and it takes time as well sometimes for it to go back down so that your mum will feel better again with itching, yellowing etc. And yes, pancreatitis can be an issue and must be watched out for.
PDT was what my dad also had for his treatment after diagnosis along with the metal stent being placed and I wrote about it a lot back in 2008 when he was going through it. My posts on this can be found on this link –
https://cholangiocarcinoma.org/db/search/gavin+pdt/
The above link has all the posts by me that have the word PDT in it. But the link below starts at page 19 of my posts on this subject and has a lot of quite detailed info about my dads treatment with PDT and that may be of more specific interest to you.
https://cholangiocarcinoma.org/db/search/gavin+pdt/page/19/
Guess if you are interested in PDT then start on the above link and work backwards from page 19! There is a lot of info in there but if you want to know more about it then please feel free to ask my anything on it and if I can help I will be more than happy to do so.
PDT is not new at all and I guess to be honest there have been mixed results with it over the years. Basically it involves injecting the patient with a substance (profirmer) that after a few days will gather on the patients tumour. Then they go in with a laser once the substance has gathered on the tumour and try to zap it. It is painless but has side effects which I talk about a lot in my postings in the 2nd link I gave you. Basically again the patient becomes hyper sensitive to light of most types for about 6 weeks. The treatment may have changed somewhat since my dad had in 08 but that is the basics of what happens. It was seen for my dad as a palliative type of treatment and he went with that over the chemo due to his desire to have a better quality of life with the option of trying chemo later on.
I hope some of that is useful to you and let me know if I can help any more. Please let us know how things go with your mum with all of this.
Hugs,
Gavin
Hi Molly,
Thanks so much for your response. My mom did get pancreatitis from only one ERCP, due to the lack of experience of the GI doctor. She has not gotten it again after multiple ERCPs, the purpose being to replace the stents. It is unfortunate that each procedure causes more inflammation, and there is no way around it. Plastic stents are limited in time and can’t exceed 3 months, but some people need to get it changed in less than 3 months as was her case a few times. This is due to the elevated bilirubin and jaundice which is an indicator for a stent replacement as there is an obstruction by either tumor, sludge, or stones. The hard part as you mentioned is inflammation which is a big issue with CC in the first place, so you are adding more inflammation to an already bad condition. Interesting you mentioned metal stents. Did your doctor explain the differences between metal and plastic stents? Did he/she mention if plastic or metal is used depending on the outlook of patient? I am getting mixed information on whether metal is used if the medical team assumes the patient has a shorter life span or if it is plastic. I also learned that metal is hard to take out once inserted and can also migrate, so we are continuing plastic which is an option I totally dislike and I try to find a way around it, and I have not found a way to shrink the tumor. This whole ordeal has always made me suspicious of these stent procedures if they make this condition worse. I have gone back and forth with this dilemma for a year and realize it is the only way to allow bile to flow easily and relieve extreme jaundice and a dangerous level of bilirubin. Have you also heard of PDT? This procedure which is supposed to relieve pressure from tumor and therefore maybe not rely on stents? I don’t know if this is new and whether patients have been successful.
I am totally interested to understand how this one metal stent in your bile duct has been effective for a year. That is amazing! What is your average bilirubin level and which duct was it placed in? What was the reasoning for the doctor to choose metal?
Thanks again, and keep going!
A possible side effect of ERCP is pancreatitis, which could make it worse. Also the process creates a lot of inflammation, which could be causing dilation in the ducts. And infection is always a possibility.
The one stent I have that doesn’t give me any problems is the permanent metal stent in my bile duct. It was put in the first part of October 2016, and has been totally trouble free. (My stent problems are in the duodenum. The Dr decided I was “full of cancer” and had tumors pressing on the duodenum- not true at all. It was inflammation from multiple ercp/eus procedures. Note: it took until December for all of the inflammation to go away (per the ct scan) from all of the procedures from June- Oct.)
The benefit of the metal stent is, that once its in, you’re done. No more ERCP’s.
I hope you find an answer soon. Jaundice is so miserable.
Molly
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