Options for clogged stents
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Hi Pat, you tell your brother, no funky nodes! I will be wishing and hoping for Mark to make that “liver” list!
Peggy thanks for clearing that up. I am not sure about the plastic inside the metal. My understanding is that what is all in the body grows around the metal but not the plastic. So, I would imagine if the growths don’t cover the openings perhaps the plastic inside can be exchanged. Not sure but a very good question. I am sure someone will be along to answer you on that one. Don’t know of the discomfort after as Teddy never had that.
Wow! It was great to wake up this morning to so many responses!! To clarify, he has had three doctors do the stent placement. Only one had difficulty with the placement itself. The first stent was placed during his initial ERCP, when they were diagnosing his cholangiocarcinoma and it was a single plastic one. It lasted just under two months. The doctors at Mayo suggested replacing it with metal, but his local oncologist said to wait until it got clogged and not to replace a working stent. Unfortunately it got clogged just as his bilirubin levels were finally approaching a level where he could do chemo. It was the local doctor who was going to put in a metal stent and had so much trouble he put in another plastic one, but also ran into difficulties with the stent placement and it had to be replaced right away. He returned to Mayo and the doctor there had no problems placing two metal stents and his jaundice cleared much faster. He has always been sedated during the procedures, but the discomfort lasts for 24-48 hours after the procedure.
It sounds like everyone else is mentioning having plastic stents, which can be switched out. My understanding is that metal stents can’t be removed, so they are in there permanently. They have now put plastic ones inside the metal ones, but does anyone know if they can switch those out once they are inside the metal ones?
Wow, Pat! FOUR ERCPs since June? I hope that the one you are having tomorrow will go as well as the 2nd and 3rd one that you had!
Thanks, again, everyone for your help!
He’s doing well, thank you! He’s half way through his chemo and tolerating it well (he just gets very tired). He’s maintaining his weight and his levels are good (white count goes down after chemo, of course). He’s having his first follow-up PET scan today, so we’ll know how things are going in a couple of days. He finally made it onto the liver transplant list, but he has a low score because he has a funky node. The radiation oncologist thinks it’s a reaction to the radiation/chemo and the chemo oncologist thinks it’s not a reaction and wants a biopsy. We’ll find out who is right when he gets the results to the PET scan back. If his node is gone or smaller, his liver transplant points will increase to 26 (I believe that’s correct). He will then start listing at other hospitals in addition UCLA where he is listed now. We’re staying positive and doing what we have to do to fight this menace!
I know there were several in England and what they went through was barbaric! Sometimes Teddy’s were 6 weeks apart too, depending. They would come get him from pre op and give him a shot there. I would kiss him right away as they move so fast, you know, and he was already out. Can you imagine getting an external bag and not be put out! Sandy how is Mark doing?
Sandy, Thanks again, I need that validation. I feel I would be remiss if I did not mention that all recipients of stents to ask to be put to sleep! Not sure you can demand it but I would sure try!
My brother is having his fifth ERCP next week. From his experiences, the Doctor who does the stent placement makes all the difference! His local doctor could only fit one stent in and also caused him to get pancreatitis after the first procedure. The doctor at UCLA was able to fit two stents in with no problems and he felt great for almost two months. Because of a mix-up with scheduling, he went back to his local doctor to have the stents replaced. The local doctor assured him that if he had any trouble, he would contact the Dr at UCLA. Well, he could only get one stent in and he didn’t call for help. My brother got yellower and sicker until he could get an appointment with the Doctor at UCLA, who put two stents in with no problems.
He also said that stents have a limited “stent life” when one is going through radiation and/or chemo. He advised my brother to have his stents replaced (at UCLA!) every six weeks. I believe that his stents are plastic because they are wider than the metal ones, but I will double-check that. Keeping you and your brother in my thoughts, Peggy! SisPat, thank you so much for your post as you validated what I was saying! I am so happy you are doing well with your stents.
BTW you brought back memories about our beloved Lisa. She was on about the same time I was on with Teddy’s CC. Yes, she truly was an inspiration and knowing Lisa she has already dined at Teddy’s Italian restaurant in the sky. I am so glad you found her even though it brought some tears we all loved her so much!I agree with Lainy. Tomorrow is my 4th ERCP since June 2013. Sad to say, sometimes it is the gastroenterologist who is placing the stent that is the problem. I have mine done about every 8 weeks with no infection or complications at all. I have had no chemo at all. I’ll keep you posted about tomorrow’s procedure. If I don’t write again, lol, you’ll know things did not work out. (smile)
Peggy, There is a member on here named Lisa. Her last post was August, 2011. Go to her posts and read her blog. She is an inspiration to me and I am so happy that this organization has not erased her posts. Even though she is gone, she lives on…….
Hi Peggy, I’ve read your posts about your brother and stent placement. I have Stage IV, inoperable cholangiocarcinoma with lymph node metastasis. I entered the emergency room after 9 days of jaundice and severe unbearable itching. I was admitted to Henry Ford Hospital, West Bloomfield, MI and CT scan showed 6 cm mass in liver with major vein involvement. They could not do a stent until the third day of my visit. A stent was placed and I went home two days later. I had soreness in the abdomen from the time the stent was placed and 10 days later I felt a sharp pain in the liver and knew the stent had shifted. I had the chills and started to yellow. I went to the hospital again and Dr. Faisal Khan (he was not the doctor who put in the first stent) placed two stents in the liver. It went absolutely perfect. Since June, 2013 I have had FOUR ERCPs. Tomorrow I will have mine replaced. My doctor said that it should be replaced every EIGHT weeks due to clogging and infection. I FEEL WONDERFUL. My question to you is: Why is your brother’s doctor having so much difficulty placing the stents? Also, do you want me to ask my doctor tomorrow any questions? I have received NO chemo, although they recommended Gem/Cis. I am thinking about starting it in November but for 6 months I have been feeling better than ok for which I am thankful. Please let me know how you and your brother are doing. The first doctor who did my stent did not know how to get the job done. Dr. Khan stepped in and I have had NO problems. Sincerely, Pat
Peggy….Due to the anatomy and the tumor location, stents can be difficult to place. In my husband’s case it went through the tumor; a procedure more than uncomfortable to tolerate. Hence, he decided to be sedated. In order to receive chemotherapy, adequate biliary drainage has to be achieved otherwise; it would accumulate to toxic levels.
For all we know, a positive response to the chemo treatment will decrease tumor growth and reduce occlusion as well. Fingers are crossed for this to be the case with your dear brother. If all fails, an external stent will be placed. Our Margaret (mlepp0416) posted extensively on this subject. We will make sure to point out the information if and when external stenting is required for your dear brother.
Hugs,
MarionHi Peggy, I was waiting to post about Teddy’s stents since it was 8 years ago and I thought things had changed a little but I am beginning to think a lot of it is the one who is doing the stenting. I don’t understand is all this pain I read about. That really upsets me. While we were in Pre Op they would give him a shot that would put him in twilight and he never felt a thing, he never once complained of even discomfort. That is my reason for thinking a lot of it is who is placing the stent. Teddy had plastic stents. They were replaced every 2 months or so. He also had his ureter stented as the tumor had bent it, again no pain. He had those dreaded blood infections 2 X A YEAR and they would put him immediately on an IV of Levaquin the ONC used to say “Levaquin would cure anything”. He had an external bag. I sure hope they can come up with a way to help your brother. Just wanted to give a positive version if stenting can be positive!
Dear Anna,
I’m so sorry for what your mother went through before she died. This really is a terrible illness, isn’t it?
My brother started with a plastic stent, and it became occluded after a little over a month. Mayo Clinic told him that he needed to have a metal stent put in instead, but he had the ERCP done locally and the doctor couldn’t get a metal stent in and so he just swapped out the plastic stent. It wasn’t placed properly and so he had to go back to Mayo, where they were able to take out the plastic stent and put in two metal stents. The hope was that they would last for at least 9 months, but they only lasted another 2 months. He was told in August that once the metal stents are occluded, that it is a “Hail Mary Pass” to put the plastic stents inside of them, but that there aren’t other good options. From what your mother experienced, it sounds like putting in an internal/external stent is a possibility, even though it doesn’t sound like a very pleasant thing to go through. The problem is that without some way to drain the liver, I would assume he would go into liver failure?
It’s all so discouraging. He has been feeling really good, and has handled the chemo with few side effects. I’m hoping that someone on this site has had a positive experience with the plastic stents inside the metal stents and know what happens when they become occluded.
Hi Peggy,
I am truly sorry that your brother is going through this. My mother had plastic stents. We were given option for metal vs plastic. We were told that the metal stents had decreased chance of clogging only because they were larger in diameter. But the bad thing about the metal stents we were told were that once they placed them, it would be very difficult to remove because of the tissue that grows over them and the stents become imbedded. MD stated that if the metal stents become occluded, they could either try to clean it out or place a plastic stent within the metal stent. But because the occlusions were too narrow, metal stents were too large and was not an option for my mom. So, she ended up with 2 plastic stents and one external/internal stent. The problem is the infection that occurs. I truly believe, it was the multiple infections that followed the stent placements that caused my mother’s condition to worsen so quickly. She was admitted with sepsis, spent several days in the ICU and after that her condition quickly worsened. We were told that infection following stent placement was a given. That it would be very difficult to prevent infection. She was on numerous IV antibiotics at home.
The external/internal stent we flushed twice a day, so it decreased the potential for occlusions, but my mom went through much pain with each change.
First, Cipro was the choice for treating the infections, but later stopped working. She was on zosyn and another IV antibiotic at home.
Her stents were changed every 6 to 8 weeks due to blockage and infection.I hope they can find a solution for your brother.
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