(19 replies, posted in General Discussion)

His counts have basically "held" since yesterday (platelets are at 10,000 and hemoglobin are at 7) so they want to give him two units of red cells and 1 of platelets tomorrow. (He's finally getting a PICC line in today...YAY!) Kris, he hasn't been taking any meds, except now he is taking steroids for the immune thrombocytopenia. The oncologist wants to do a bone marrow biopsy later this week to see if they can figure out why he isn't making red cells. It seems odd that this is happening now. He hasn't had chemo since last fall, and finished up his radiation treatments in February. Is it common to have suppression of the bone marrow months after chemo/radiation?


(19 replies, posted in General Discussion)

OK, we're back on the roller coaster! :-( My brother went back to the hospital today (48 hours after his platelets had gone up to 19,000) and they had dropped back to 9,000. The doctor upped his steroids and he goes back to the hospital tomorrow. If they drop any lower, they will have to give him platelets. His hemoglobin has also dropped a bit, but they aren't too concerned (7.5, down from 8.9) The biggest concern is the platelets as they can cause bleeding, which will in turn lower his hemoglobin.


(19 replies, posted in General Discussion)

Great news! His blood counts have stabilized and so the doctor said that it confirms that the problem with the platelets was caused by an autoimmune response to the platelets (his body is attacking the platelets). But, the good news is that the doctor thinks that they can manage it with steroids. So, he is no longer bleeding, his platelets are up to 19,000 (still low but WAY better than 2,000!) and the doctor discharged him today! He has to return to the hospital for a blood check on Sunday and then he returns to the oncologist on the 16th for another CT scan and blood work. But the director of the hospice program said that my brother isn't ready for hospice yet and that he believes that he has some more "tread left in his tires". As many of you have mentioned before...it's a real roller coaster ride, isn't it? He came so close to not making it this week, and now things are looking good again!

Thanks for all your good wishes and prayers!


(19 replies, posted in General Discussion)

Thank you all. Lainy, I received the list. Thanks! I'm off to the family meeting with the doctors and my brother's family this morning.


(19 replies, posted in General Discussion)

It's been quite a long time since I've been on this site and thought I'd give an update on my brother, who was diagnosed with with Stage IV CC last June. First of all, I want to thank Helen and Gavin again for providing my brother with contact info for a doctor who was willing to step in and help out if he had a problem during his trip to the UK. He was able to make contact and felt so much better knowing that he had a "Plan B" in place. Fortunately, he didn't need to use it!

In January, he began a 30 session radiation treatment. He debated whether to do it as the doctors at Mayo had said he wasn't a candidate, but after chemo, his doctors here felt that the tumors had shrunk and that it might be effective. It really took a toll on him, though. It was much tougher than the chemo was and he really hasn't felt good ever since he started the radiation treatments.  He finished up his radiation treatment at the end of February. He took a brief break from the medical community, but then in March/April  he came down with pneumonia, and a CT scan showed a metastasis to his spine, which needed to be treated with 5 sessions of radiation. He was supposed to get a reprieve from the medical community after that, but he started to suffer from ascites, developed a hernia from all the coughing during the pneumonia, etc. Two weeks ago, they discovered that he was anemic during a routine blood test, and that meant a blood transfusion that took 11 hours. More ascites, another CT scan and a PET scan in which his abdomen "lit up" and the doctor said that he had microscopic cancer cells floating around his abdominal cavity. He planned on taking a trip to Vegas this week with his sons and a group of friends and went to the doctor on Monday to have him check out his persistent cough. His lungs were ok, but blood tests showed that his hemoglobin had dropped to 4 and his platelet count was 2,000! (less than two weeks earlier, it had been around 140,000!!) So, he was taken immediately to the hospital and placed in intensive care. He had a reaction to the transfusions and developed a fever of 104 and couldn't stop shaking. After his platelets came up enough, he had an endoscopy done, which showed esophageal varices and a bleeding ulcer in his stomach. They now think that he has developed an immune thrombocytopenia. Understandably so, he has started to question "quality of life" issues. We are having a family meeting tomorrow with his chemo doctor, and the hospitalist, who is also a hospice doctor.

Lainy, you mentioned earlier that you had a list of what to expect during  the last stages of CC. Could you please send it to me so that we know what to expect. I know that others have asked questions on this site about how you know when you're near the end. I guess that is where we are now. How do we know? What should we expect? etc. Any feedback from those of you who have gone through this journey would be greatly appreciated. Thanks!

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.

Hi LadyLinden,

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!

Take care,

Dear LadyLinden,

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!


(15 replies, posted in General Discussion)

Dear Sandie,
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,

Hi Wallsm1,
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!

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.

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!


(43 replies, posted in Introductions!)

Hi all,
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.


(43 replies, posted in Introductions!)

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!

Hi Lainy,
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.


(4 replies, posted in General Discussion)

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!


(4 replies, posted in General Discussion)

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!


(43 replies, posted in Introductions!)

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).


(43 replies, posted in Introductions!)

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!

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.