Topic: Another new member

My brother was just diagnosed with stage 4 cholangiocarcinoma that has spread to his liver and lymph nodes. He is a Vietnam Vet and I have seen that there is a lot of information out there about the Vietnam service/cholangiocarcinoma connection. Since we live in Minneapolis, he went to Mayo Clinic in Rochester. They have said that his cancer is non resectable and also that he isn't a candidate for radiation. He will begin his first round of chemo next week. I'm not sure which chemo he will be on, but the oncologist said that he will be treated on Day 1, Day 8 and Day 22 and then have a CT scan to see whether he is responding to the treatment.

Re: Another new member

Hi,
Below are the links that may be of value to your brother.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

God bless

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Another new member

Hi Peggy,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your brother. But I am glad that you've joined us here as you've come to the best place for support and help, and I know you will get so much of both from all of us here. We have a few members here who's husbands were Vietnam vets and I know they will be along soon to share with you as well.

Did your brother seek any more opinions or was Mayo the first opinion that he sought? How do you think he would feel about seeking a second or third opinion from another doctor or facility? I'm sorry to hear that his CC is non resectable, my dads was the same. We have had quite a few members here who were told that their CC was initially inoperable only to have that changed once treatments had started.

I hope that your brothers chemo goes well and my fingers are crossed for the best possible outcome here. I know that you'll have questions so please feel free to ask them and we'll do our best to help in answering them. And I hope that you keep coming back here, and please keep us updated on how everything goes for your brother. We are here for you.

My best wishes to you and your brother,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Another new member

Peggy,
Hang in there. Get multiple treatment opinions and know that you and your brother aren't alone. Once treatment is in place it gets easier to breathe. My sister has made it a year, is stable and stage 4. Surprised they said no to radiation...there are many types that target tumors while avoiding healthy liver tissue. If he responds well to one of the chemist, treatment options can change.
Willow

Willow

Re: Another new member

Chemos not "chemist"!

Willow

Re: Another new member

Peggy....welcome to our site - the one no one wants to belong to yet is happy to have found. Indeed your brother is in the company of other Vietnam Vets with this disease.  This particular thread may be of interest to you:
http://www.cholangiocarcinoma.org/punbb … hp?id=7011

and here are others:
http://www.cholangiocarcinoma.org/punbb … hp?id=8663
http://www.cholangiocarcinoma.org/punbb … 89&p=2
http://www.cholangiocarcinoma.org/punbb … hp?id=8765

Peggy, don't hesitate from obtaining a second opinion from a center "very" familiar with this cancer as specialists don't always agree on the treatment protocol.  You may only receive confirmation of what already has been determined however; there are some surgeons that are more aggressive than other and some oncologists prefer one chemo regimen over the other.  Either way, it always is good to have confirmed what already has been determined.
Please, continue to stay with us.  We are in this together.  I am sure for others to follow real soon and to share some of their thoughts with us.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

Mayo was actually a "second" opinion. (and he saw a large team of people there who discussed his case with him) He is now being treated by another oncologist closer to home (who did his fellowship at Sloan Kettering) and seems to agree with Mayo on treatment options. From what we've read, Mayo is one of the large treatment centers very familiar with this type of cancer. Hopefully he will respond well to chemo and that might open up other options? There is involvement of the portal vein and also the hepatic artery. He has metastases to the liver and nodes.

Re: Another new member

Dear Peggy, welcome to our extraordinary family but sorry you had to find us.
I can only say ditto to what has been said. I believe you and your brother are a great team and have done just what you should be doing especially about the 2nd opinion. Yes, it is very possible that Chemo can open up other options. This crazy CC requires a lot of patience, good attitudes and lots of strength. I promise though that once the treatment starts somehow the fright turns to fight and that's a good thing. Wishing you and your brother the very best and please keep us posted as we truly care!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another new member

My brother was supposed to start chemo today, but the oncologist said it was safe to wait until Monday because we have a big family wedding out of state, with people flying in from all over the world for it. Tonight he wrote that the jaundice has returned, he has a low grade fever and is feeling crappy! It sounds like the stent is failing, right? So, most likely he can't come, which is a big disappointment to everyone, including him! He can't have chemo if his bilirubin rate is elevated and it took almost 2 months to get it low enough to be able to start the chemo! He's discouraged. We all are. Hopefully they can replace the stent soon. How long do the stents usually last? The local surgeon had put in a plastic stent and it was supposed to be replaced by a metal one when he had surgery, but then he wasn't eligible to have surgery. Mayo said to replace it, but that he could do it locally, and the local oncologist said to wait until it fails. What horrible timing!

Re: Another new member

Hello Peggy, I am so sorry that your Brother cannot make the big family event but he could never travel like that. wow, I don't understand an ONC not exchanging the stent of a patient who is Jaundice and with fever! The stent is probably the reason, ya think, Doc? My husband had plastic stents and they had to be changed about every 6 weeks to 3 months, they do clog up and this is what happens. Sounds like he needs a stent exchange now. If your Brother would go to Mayo ER they would probably do the exchange upon examination. I am not a Doc but this is what I think. The new stent will give him quick relief. Best of luck and please let us know the outcome!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

11 (edited by marions Thu, 18 Jul 2013 10:08:54)

Re: Another new member

Peggy....I agree with Lainy; the stent can be replaced at the local hospital and it can be done immediately.  Please have him make a call to the physician.  Fever is not to be ignored in fact, it has to be reported in order to avoid major infections.  Please keep us posted.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

To be fair to the ONC, on Monday when he saw him, he had a low grade fever, but no jaundice. Thanks for your advice, though. I know he was going to call his ONC this morning. Hopefully they can do the exchange and he'll feel better soon!

Re: Another new member

I sure hope they can get him in right away. He has every right to be discouraged about missing the wedding and delaying chemo again. Sounds like The sooner he gets stent replaced the better.
Wondering Peggy, you are registered as from Singapore but sounds like you're in the US(?)
Hang in there...you're a good advocate for your brother. Sharing his experience and learning from others here really helps.
Willow

Willow

Re: Another new member

My brother was able to see the doctor today and a stent replacement is scheduled for tomorrow. They told him that this is a "permanent stent" (whatever THAT means!) that should last 6-9 months. My sister-in-law and nephew will remain in town with him until Saturday, in case he feels up to coming to the wedding.

Willow, I live in Singapore for 9 months/year, but am "home" for the summer. I was still in Singapore when he was diagnosed and I registered.

Re: Another new member

Peggy....I assume that the "permanent" stent is made out of metal.  These stents do not clog with debrie and sludge as easily as those made out of plastic.  Metal stents can be cleaned. 
Your brother may still make the wedding after all.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

Dear Peggy I so hope your Brother can make the wedding. With either stent the patient usually feels much better even the next day. There is a possibility! What city would he be going to? If he makes the trip you might to know the name of an ONC  there just in case. Always be prepared.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another new member

Hi Peggy,

I hope that the stent exchange  goes smoothly for your brother. My dad had a metal stent inserted as part of his treatment and it worked very well for him. Cleared up his jaundice quite quickly and he felt a lot better after having it placed. Let us know how things go.

Best wishes to you and your brother,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Another new member

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!

Re: Another new member

Everything looking good, Peggy! There should not be a problem as I think they may be using the same 'route' for stenting. I am crossing everything for a good stenting and outcome, even crossing my eyes!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another new member

Peggy....I too hope for this stent replacement to go smoothly. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

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.
Peggy

Re: Another new member

Peggy.....I am so sorry to hear this and I believe that this is not a consolation, but this is so typical for this disease.  Just when we think we are heading forward something causes us to fall back again.  We then have to dust off and go after it again.  Wishing for the upcoming CT scan will shed some more light on the situation and for things to finally move forward.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Another new member

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.
Peggy

Re: Another new member

Hi Peggy,

Sorry to hear about the infection and that the stent placement did not go as planned, grrrr. I know that it is so frustrating and another bump in the road to get over but please do not give up hope. I assume that they will be giving antibiotics to deal with the infection and I hope that these work quickly. And also hoping that the CT will show what is going on so that this can be sorted asap and then the metal stent placed and chemo can begin. Stay strong Peggy.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Another new member

Oh, Peggy, I am so sorry to read this! This is why we gave CC the nickname of being a roller coaster ride. Ups and downs and the timing is always the pits. When my Teddy would get these infections they would put him right on Levequin as his ONC said Levequin would take care of anything. Wishing him the very best and a quick healing and for you the best you can do is be very strong. Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.