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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.
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.
WillowTo 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!
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
MarionHello 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!
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!
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!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.
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/viewtopic.php?id=7011and here are others:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8663
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1589&p=2
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8765Peggy, 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,
MarionPeggy,
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.
WillowHi 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
Hi,
Below are the links that may be of value to your brother.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
God bless
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.
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