Yes! Thank you, Helen and Gavin! I'll pass the information on to my brother.
Yes! Thank you, Helen and Gavin! I'll pass the information on to my brother.
Hi, I have sort of an odd request. My brother was diagnosed in May with stage IV CC. He has had 4 ERCPs done. In August, he had two metal stents placed that were "supposed" to last for 9 months. In mid-October, they failed and the doctors at Mayo cleaned them out and put two plastic stents inside of the metal stents and said, "see you in 2 months". They are still doing fine and his oncologist has said that it doesn't make sense to do another ERCP until they fail. But, he is planning on traveling to the UK to visit his son and family in London for Christmas. Obviously, everyone is a little nervous about having him go on the trip, but his oncologist has told him to go and if he runs into trouble, he can always find someone in London to do an ERCP on him. The timing of his trip, of course, falls right at the time when he expects that his stents MIGHT fail.
I think that rather than wait until he runs into trouble, it would be best if he had the name of a doctor or doctors who are very experienced with CC and with this procedure as once the stents fail, he gets very sick very quickly. Does anyone have recommendations? (I know that there are some members who are from that area, so I'm hoping that you'll have some advice.) Also, is it difficult for a foreigner to get medical treatment like that ? (I'm assuming that his US medical insurance covers him abroad.)
I think that it was the "A team" trying to do the IV. :-( I haven't had chemo, but I do have small veins that "roll" and have had lots of IV antibiotics over the years and used to have the nurse anesthetist come in to start my IVs. I had them write it in my orders so that if my vein blew in the middle of the night, I wasn't at the mercy of a reduced hospital staff. For me, though, the biggest factor was the size of the needle. With the larger gauge needles, they just kept blowing through veins.
I'm not exactly sure why he isn't keen on having a port, whether it is because he has to deal with having it in all the time (cleaning, etc?) or just doesn't want another procedure. He has two more chemos scheduled before his next CT scan and then the possibility of a third one depending upon what the scan shows. I think that he feels at this point that he is close enough to a chemo break that he isn't sure that he wants to go through the port deal and would rather "tough it out".
How many Gem/Cis cycles do most people go through before they put one on a chemo "holiday"?
An update on my brother...his numbers were really good today (well 80% of them!) But, good enough to go ahead with his chemo treatment. Good news is that the doctor did confirm that they can probably swap out the plastic inserts in his metal stents when they get clogged.
He has small veins, though, and they have really taken a beating from the chemo and blood draws and it took 2 nurses 11 tries before they were able to do the blood draw. Of course, they had trouble with the IV to run the chemo, too. I've given him the suggestions to make sure that he is well hydrated before he goes in, no caffeine, and to use warm compresses. I've also found that I do better with a pediatric needle, but don't know if they will have those on site. He really is trying to avoid a port, and so I thought that maybe some of you have some other tricks up your sleeve of how best to get battered veins to cooperate for blood draws/IV's.
I'm sorry that you are still sore. Hopefully each day will be better. My brother does have a few rough days each time he has an ERCP, but he's always been jaundiced when he goes in. This one was rough in that he got really sick afterwards. The doctor explained that when they "unclog" the stent, all that crap goes into your system and makes you sick.
Tomorrow he has his blood work done again and hopefully his levels will be good enough that he can have his chemo. He does feel like at least when he is doing the chemo, he is doing something to fight this disease!
You have been on my mind so much lately as I wondered how your procedure had gone. I'm so sorry that you didn't have the positive experience that you had with the plastic stents! Hopefully today will be a better day. Did they tell you anything about what the future will be with the metal stents? If clogged, will they put plastic inside them?
We were all worried about how my brother would respond to the chemo, but honestly the chemo has been the easiest part of his whole treatment so far. He said that it's boring to sit there for 5 hours for the infusion and since he chose not to have a port put in, the veins in his arms are taking a beating. He's had very little problems with nausea, though, and very little vomiting. It does seem like the chemo is having a positive effect, too, with no new growth and one tumor showing some shrinkage. So, we're hoping that it will buy him some extra time!
I'm sorry to hear of your little setback! My brother has been on Gem/Cis since August with very minimal side effects. About five days after his infusion he vomits once or twice and then is ok again. Hopefully you'll breeze through the treatments! Take care,
They haven't mentioned an external bile bag yet. I guess if they are unable to swap out the plastic inside the metal, maybe they'll do that? We're hoping that they can swap out the inner stents. Thanks.
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!
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.
Thanks, Marion. We're hoping that someone has had experience with this and can give us an idea as to what to expect. I just spoke to my sister-in-law and she said that he is really discouraged because they told him in July that the plastic stents inside the metal ones don't last nearly as long as just the metal ones and it is sort of a last ditch effort. He didn't ask today what the options are once these fail. Hopefully they can swap out the plastic stents inside the metal ones, but we just don't know.
Here is another update on my brother. A couple of weeks ago, things were looking great! His labs were great, his CT scan showed no new growth with a slight decrease in size of the largest tumor in his liver. A week later, his labs were slightly off (but still able to do chemo) and a week after that, he was jaundiced again, vomiting, etc. So, it was back to Mayo for his 4th ERCP in 4 1/2 months! They cleaned out the metal stents and placed plastic stents inside of them. Last summer, before putting in the metal stents, he was told that the metal stents should last about 9 months and after that point, they would probably clog and that as a "last ditch effort", they can then put plastic stents inside the metal ones and that should buy him another couple months at best. Since the metal stents only lasted about 2 months and the plastic ones he's had much shorter than that, we're looking for what the options are if/when they become clogged again. Has anyone had experience with this? Do they take the plastic ones out from inside the metal stents and swap them out? He finds it very discouraging to have to have these repeated ERCP procedures. Thanks!
I have another update on my brother. He was finally able to start the chemo on August 13th. He has had very little in the way of side effects from the chemo and actually said recently that he felt the best he has felt since this whole ordeal started in May. He had a CT scan done recently and got the results two weeks ago and they were better than hoped for! There were no new growths, the largest tumor in his liver had actually shrunk a tiny bit and his labs were the best they've been since May. We were all flying high! Then, for those of you who have referred to this cancer as a roller coaster, last week we were jolted back to reality a bit, when his labs were all over the place. Still good enough to do chemo, but not great. Monday he started to vomit and he thought it was just from the chemo. (He tends to do well from chemo Tuesday until about Sunday, then vomits a couple of times and is ok again.) Apparently it wasn't, as he started to feel worse and worse and when he had his labs done on Tuesday, they were not good, and he is jaundiced again.
His doctor called the surgeon at Mayo who did his latest ERCP and double metal stent replacement there and he is on vacation. (Of course!) But, he has had so many troubles with the ERCPs that the oncologist said that it is worth waiting until next Monday to have that doc do it again. (He could have someone else at Mayo do it this Friday, but everyone decided that a couple of days won't make a difference.) To say he is discouraged is an understatement. He was told during the summer that these metal stents should last about 9 months and then the options aren't great. They can put plastic ones inside the metal ones, but that it is only a short term solution. The metal stents only worked for about 2 months. I told him to monitor his temp, etc. as I'm concerned that things could get out of control by next week, since he's already having more symptoms because of the jaundice. Are there other things that he should be monitoring while he is waiting to get in to Mayo? Does anyone have experience with what happens when the metal stents fail?
I'm 9,000 miles away in Singapore and feeling very worried and helpless to do anything for him.
I finally have an update on my brother. He went to Mayo this week and had another ERCP and stent placed on Tuesday. The procedure went well and they were able to place 2 metal stents so that now both lobes are draining. Hopefully that will help with the jaundice so that he can finally begin his chemo treatments. I know that it has been discouraging that he was diagnosed in May and still hasn't been able to begin his chemo!
Is it possible for your husband's doctor to review his medical records and write a letter stating that "more likely than not" his cholangiocarcinoma was caused by his eating fish during his military service in Korea? I don't know anything about the process of filing a claim with the VA and whether there is a time limit? But, it might be worth investigating. My brother's oncologist brought it up to him and said that he is quite sure that he got it from his military service in Vietnam. My brother has told me that their only source of water was from the local streams and rivers. They dipped their canteens in the polluted rivers and dropped a couple of "water purification tablets" in it and drank it. Apparently the iodine tablets kill bacteria and not parasites. I'm trying to research about that now, and have found confirmation about that for other parasites, but haven't been able to find information about liver flukes specifically.
I did find a couple of posts on here that mentioned gout in the CC patient, but they seemed fairly old (2007-2009). Just wondered whether other people were affected by it as well. Thanks!
My brother is really suffering with gout this summer. He never had gout until this year and I wondered whether gout goes along with this cancer? If so, does anyone have suggestions for dealing with gout? Thanks!
I don't know whether the metal stents prevent radioembolization, but he doesn't have a metal stent (yet) and Mayo told him that he wasn't a candidate for radiation (or surgery).
What happened last week is that his local oncologist wasn't in the office on the day that he called to say that he had become jaundiced again. The ONC called in and got the message and referred him to someone else. The local ONC has treated other CC patients (and did his residency at Sloan Kettering). My brother was referred to the local ONC by his ONC at Mayo and apparently they have worked together. The surgeon who did the ERCP on Friday told my brother that when he was at the University of Minnesota for 6 years that he did ERCPs every day. He apparently called some of his "friends" at the U of M today to discuss my brother's case and they advised that he return to Mayo. My brother is located in Minneapolis, but in a suburb that is pretty far out of town. I'm not sure, but from his understanding of the situation, the stent was not placed where the surgeon really wants it and it is very temporary? The dr did say that he isn't sure whether he has another (new?) tumor growing or whether it is an infection. He was placed on oral antibiotics on Friday. The drs office was SUPPOSED to call Mayo today to make an appointment for him to go back, but he hasn't heard back from them, so I told him that he shouldn't wait around and should call his ONC's office at Mayo and tell them what's going on and say that he needs to come down asap! Mayo does NOT require a dr's referral. He got in originally by just calling Mayo and telling them that he had CC and wanted to be seen at Mayo. Thanks, Lainy, for your support. It really helps to have someone to "talk" to about all of this!
Re: Rate of bilirubin regression after stent placement (9 replies, posted in General Discussion)
Here is the link to the article: http://onlinelibrary.wiley.com/doi/10.1 … .23454/pdf
According to the article, it sounds like it would probably be 4-6 weeks, but had wondered if some of you had better results than that.
Thank you, Mary, for your prayers. I will keep you in mine, as well! The doctors at Mayo have said that he isn't eligible for radiation, but we're not really sure why. So, since chemo is the only treatment he is being offered, we are quite anxious to have him get started. His second stent placement didn't go well, and he is being sent back to Mayo. I hope that they get him in quickly.
Well, I just got another update from my brother. Yesterday he had the CT scan and the dr called him and left a message saying that he was very pleased with the results and that they were much better than he expected and that he would call today with more information about the results. So, he was thinking, "FINALLY, some good news!" Then he got a call today. At first the dr. was sounding fairly positive, but then said that when he went to do the stent replacement that he found a cavity that he's never seen before in any of the other patients he's seen and that it prevented him from placing the stent where he wanted to. There was also a "pus like" mass that could either be an infection or another cancerous tumor. He apparently feels uncomfortable with this situation and wants my brother to go back to Mayo for more imaging and metal stent placement. So, now he has to wait to get back on their schedule and feels like he has wasted the last couple of weeks. When he was last at Mayo, his bilirubin was at 2, and he was ready to do chemo, but Mayo said that he should be able to have the chemo done and the metal stent placed locally. He's very discouraged that now he has to go back for another ERCP and all the unpleasant side effects from that and the fact that he is about 2 1/2 months out from diagnosis and they haven't been able to start any treatment yet. As Lainy said, CC is really a roller coaster ride. I just feel like the clock is ticking away while we're still trying to get chemo started so that he can start to get better!
Topic: Rate of bilirubin regression after stent placement (9 replies, posted in General Discussion)
I found an article about a study done at MD Anderson about the length of time for the bilirubin to regress after a stent is placed. In the article, it says that if the bilirubin rate is < 10, it usually takes around 3 weeks and >10 about 6 weeks. My brother's bilirubin rate was 28 at the time of his first stent placement and it took about 7 weeks to get down to 2, so that he could have chemo. Before he could get in for the chemo, however, his stent clogged and within a week from the reading of 2, his level was 15. Another stent has been placed, but I'm concerned about how long it will take for his bilirubin rate to go down enough so that he can get started on the chemo. According to that study, it would seem like it might take another 6 weeks, but wondered what others have experienced. Are the results different if it is the first stent or subsequent stents? I know that he is eager to get going on treatment...as it is now 2 months post diagnosis.
Thanks, Marion. It's just so frustrating that he can't get to the point where he can even start the chemo. Hopefully the CT scan will shed some light on what's going on.
Hi, we are still trying to get details, but have heard some sketchy information. Apparently the stent placement did not go well. They were unable to place the metal "permanent" stent and so had to put another temporary stent in. He has some sort of infection so they want to have a CT scan on Monday and also do some bloodwork. They said that they have to figure out the infection before they can put the permanent stent in. His bilirubin is 15, so chemo will have to wait until he gets back down to 3 or below. It's SO discouraging since it took 7 weeks after the first stent placement for the bilirubin to get low enough for chemo and then the week that he FINALLY got there, this happened before he could start.
When he had his first ERCP and stent placement, he had a really rough first night. I told him to let the surgeon know, because they do have pain medication that they should be able to give him for this round so that he doesn't have as much pain. His stent placement is scheduled for late this afternoon, so I'm really hoping that he is feeling better tomorrow morning. It's a 5-6 hour drive to the wedding, but the wedding is going to be in Iowa City, and he'll be within a mile or so of the University of Iowa Hospital, so there is excellent medical care available here. Thanks for all your caring and concern!