Husband diagnosed May 2010
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He is really unsure what to think….on one hand they said that the lymph nodes look suspicious, that they might just be irritated because of radiation, but that the cancer may have spread to them, too. On the other hand, yesterday they said that the treatment was effective because the cancer had not grown any further. He is depressed, though, that he might have to endure cycle after cycle of chemo for years just to keep the cancer in check.
Julieanne….With this cancer “stable disease” has taken on a whole new meaning. Was Ott pleased with the results?
All my best wishes,
MarionThanks to everyone…..the doctors decided to go with irinotecan paired with more oral Xeloda……….let’s see how it works out. The doctor was really nice today….He explained in great detail the different possible treatments, and why they had been ruled out in Ott’s case. He said that actually, they consider the radiation and Xeloda combo a success because the tumor didnt grow larger. ….. Victory exists in all forms.
Julieanne,
Your husband reminded me of me. I have an inoperable Klaskin tumor diagnosed July 09 with hepatic artery and the portal vein involvement. Only half of my liver is there as the other half is atrophied. Like your husband, I do not qualify for the other treatments you mentioned.
My treatments have been radiation with 24/7 FU-5 chemo fall 09, and gems/cits chemo June 10 – Oct. 10 with never a change in tumor size. I do have a stent – only one as the other duct is not there.
Originally I was given 3-14 months max. I am now past 18 months and feeling very good (but anxiously waiting my next MRI in a couple of weeks). I guess my point is that we never know how long we have on this earth. None of us.
Statistics are for the masses, not the individual. I’ve already beaten the odds and hope I will continue to do so.
As for controversial treatment plans, I’ll stick with my Mayo doctors. I do have what I tell people is my “false internet cure” which is eating asparagus twice a day, right out of the can
The doctors just don’t know what is best right now, but I’ve read on the board about clinical trials. Perhaps the best treatment will present itself and more of us will beat the odds.
Best wishes to both of you. It’s a very hard journey at times, but there are blessings to be had.
Kathy
Julieanne:
So sorry to hear about your husband. And welcome to this site that no one really wants to join. My husband Tom was diagnosed in March 2008. He was able to have a resection where they removed 3/4’s of his liver. He did not have chemo after the resection. In Nov. ’09 he started turning jaundiced. He now has an inoperable tumor in the remaining right side of his liver. It too involves the arteries. He also underwent the xleoda chemo after 28 rounds of radiation to kill the tumor. His doc’s are unable to get an internal stent into the liver, so he has an external drain with a bag to collect the bile.
We also went to Mayo clinic in rochester. They were unable to help him. In Dec. 09, his then oncologist told him to go home and get his affairs in order, that chemo/radiation would not help him and he had 6 months at the most.
So here we are 15 months later (remember that no one has an expiration date stamped on their butt!) and he is still here with me. He went though the radiation, then the oral chemo…after a ctscan, the radiologist ‘thought’ he saw a mass in the pelvic region, so they installed a port and he underwent about 5 rounds of iv chemo, Gem/Cis and within 4 weeks the ‘mass’ was gone. We no longer think it was a mass or even cancer. He has not had chemo in over 2 months and to date all of his numbers look pretty good.
You can read more about my husbands journey under my long in name, MLEPP0614 “My husband and Cholangiocarcinoma” and “My husband and Cholangiocarcinoma – Part 2”
Never accept no for an answer, ask what else can be done instead. Seek 2nd, 3rd and 4th opinoins if necessary. Make sure that your hubby’s doc is knowledgable about CC or has resources that he/she can tap into.
If we had listened to my husband’s first onc that told him to go home and die, I know for certain that he would no longer be here. Instead we sought out other medical opinoins. And the fact that he has outlived that 6 months shows what prayers, attitude and good medical care can do!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Julieanne,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your husbands diagnosis. But I am glad that you have joined us here as you will get a load of support from us all. And please, if we can help in any way at all that you think of then just ask and we will all do what we can to help and answer any questions that you have.
My dad was diagnosed back in 2008 and his tumour was too close to the portal vein which ruled out surgery for him so he had Photodynamic therapy and had a metal stent inserted as well. I agree with what the others have said to you about not giving up hope as who knows what lies ahead. And I am sure that all of your family and friends telling you about these controversial treatments mean well, but I know that it can get overwhellming for you. Finding out all you can about this disease is a good thing to do, and as Lainy says, the search forum function at the top of the page is a great resource here and it will throw up discussions on so many topics. But if you find something that does not throw up any discussions then just ask about it here.
My best wishes to you and your husband,
Gavin
Julieanne,
I too want to extend a welcome. You will find support and information here not to be found elsewhere. I would encourage you to even in the face of a difficult prognosis, to hang onto hope. Every new day has the potential to bring reasons for hope.Grace and Peace,
bobDear Julianne – You have received such difficult news and there are more questions than answers. On this site, we can offer you friendship and support to help you face the days ahead. Keep up your hope. Like Lainy said, attitude is so important. Cherish each day. Celebrate your life. Spend as much time together as possible. It’s a difficult road, but you are not on it alone. Please comment often so we can keep up with your husband’s progress. Hopefully the Gemzar/Cisplatin will be effective on the tumor. Virtual hugs to you. Blessings, Susan
Julianne, that is the Mayo I was hoping you went to. Yes, they are actually one of the top for CC. So, now you get ready for the next Cocktail, Gem/Cis which is one of the more popular combos. As long as the ONC has games plans available one must have lots of hope to go along with the plans. Attitude does help. We were not born with expiration dates and with CC you just never know. We have members who were given months and its been years. Stay strong and please keep us posted.
Thank you, both, for the welcome. Ott’s tumor is classified as a Klatskin’s tumor…intrahepatic, wrapped around the hepatic artery and the portal vein. The left lobe of the liver is non-functioning. His bile duct was so blocked when they did the initial ERCP that the gastroenterologist could only use the smallest stent. We went to the Minnesota Mayo Clinic, because it seemed that they had the most information about bile duct cancer –they stressed that they saw 100-150 cases a year– we went thru snow storms coming and going….nothing special to Northerners, I am sure, but we noticed we seemed to be the only fools on the road at times.
I had asked about Photodynamic therapy and brachytherapy, but Dr. Nagorney said that neither option was possible for my husband. Photodynamic therapy is only effective for small tumors, they said, and since he has already had radiation, he was not a candidate for the brachytherapy.Julieanne – I’m sorry to hear about your husband. We’ve all gone through all the emotions you are feeling right now, so feel free to let go on this web site. This is the greatest support group EVER! I understand your feelings about all the “suggestions” from others….as Lainy said, everyone means well, but it can be overwhelming. We’re here for you. Just let us know what you need! – Nancy
Julieanne, welcome to our wonderful family but sorry you had to join us. Sounds like you have pretty much learned the routine. May I ask which Mayo you went to? You brought back some memories that I had forgot about…all the “other” plans. Teddy has a son that was ready to take him to Mexico. I said absolutely not. I guess people are just trying to be helpful. I used to send out e mails daily to all and when something like that came up I just wrote, we appreciate you concern but we are very satisfied with our team of Physicians. Please no more suggestions. We have a search site at the top of the page and if you just type in a word pertaining to what you want to know, a basket full of posts will appear. Where is your husband’s CC located? How is he physically feeling? We do adhere to any time frames but we do practice more opinions until we are totally satisfied. Also there are many chemo cocktails so if one does not do the job something else may. Please keep us posted, we all care!
My husband was diagnosed last May….we thought he had food poisoning, with his nausea. We didnt notice the jaundice, which appeared gradually. He hadn’t told me of his lack of energy, or his dark urine. So many symptoms, which went unnoticed until too late. His first round of chemo was Gemcitabine and Oxaliplatin. The tumor shrank some, a little more than 20%, but not enough for resection. This was followed by six weeks of radiation paired with oral doses of Xeloda. Not only was there no shrinkage, but now it looks like the cancer may have spread to the lymph nodes. The doctor laid out the next round of chemo….Gemcitabine paired with Cisplatin this time.
We went for a second opinion at Mayo………despite all the different therapies listed on their Website, they said that with the size and position of my husband’s tumor, the conventional chemotherapy is all they could offer, with the same drugs that MUSC plans.
My husband is becoming resigned that nothing will work…that we are just buying time. Meanwhile, everyone is calling about every controversial treatment plan they have heard of………
I’m glad to find this site….perhaps there will be something we can use to help improve his treatment.
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