Nothing is working…
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Mayra,
Sorry to hear about your husband. I hope the sirsphere is successful in shrinking the tumor. Keep us posting and we will be keeping you in our thoughts.
ashleyHey Mayra…. I am new to the site as well and have found the greatest support here! I am right along with you as we fight this horrible disease our loved ones are going through!
Jeff Grieder
Houston TexasWelcome, Mayra, Eddie and Kayla to our wonderful Family. I was wondering if Cyber Knife had been mentioned to you. My husband had it last year and it is amazing. The tumor must be under 7cm and there cannot be too many. But it is a Miracle. You have a good attitude and that is so very important. As you can see we had an awesome day here today with many success stories and soon we hope to hear that Eddie has joined the Miracle group.
Myra:
Welcome to the site, you will find lots of advice on this site. So sorry to hear about your husband. My husband Tom also has CC and went through a liver resection in June ’08. He presented with another tumor, 2.5cm, inoperable in Nov ’09. His original oncologist gave him no hope, told him to go home and die and that chemo and radiation would not help.
We ran to get 2nd and 3rd opinoins. End result he had 28 rounds of radiation and the tumor is shrinking. He started chemo a week ago and next week they will try to place an external stent. He’s had an external bile drain for the past 2 months cause the tumor was completely blocking the bile duct and they could not get through. Now there is bile going through the duct so the doc is pretty positive that they can get the internal stent in.Never give up the fight against CC. Always seek other opinoins, Discuss radiation for your husband. It did help my husband Tom (My husband and Cholangiocarcinoma is his story under my login name mlepp0416)
My husband is 63 years young and prior to his diagnosis he had no symptoms. We don’t have any young children anymore, but we do have lots of grandchildren, the youngest is only 8 months old and is named after his Papa Tom.
Prayers are coming your husband’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Myra…I would like to follow Kris and Gavin in welcoming you. As Kris has mentioned already, some people simply don’t respond favorably to the currently available chemotherapy treatments and no one seems to know why this is. Eddie may have better luck with the current regiment. I believe, your physicians are quite aggressive in trying to hold this cancer at bay. As Gavin has mentioned there is much information hidden in the previous postings something, you might also want to peruse.
I am wishing for success with the chemo and upcoming Sir-Sphere.
Best wishes,
MarionKris and Gavin thanks for you suggestions. I will look into that. My husband is also very young Kris… only 36. We are never giving up. Our baby girl Kayla will now allow us to.
Prayers you way,
MayraHi Mayra,
Welcome to the site, although I am so sorry that you have to be here. Please come back often and ask any and all questions that you have as you will get so much support from us all. And I know that there are people here who will be able to answer your questions. Although I cant help you with your chemo questions, I know others will be along soon that can help.
My dad’s CC was deemed inoperable and his treatment was PDT with a metal stent inserted. He had no chemo so I can’t share his experiences of that with you. If you look at the top of the page here, you can use the search forum function to look for posts regarding the chemo treatments you mention and you will find a lot of posts that may help you.
I hope that Eddie’s SirsPheres treatment goes well in March and I will keep you all in my close thoughts.
My best wishes to you and your family,
Gavin
Mayra,
Welcome to our family. Yes, I have experienced the same problem of no response to chemo. It is very discouraging. But do not give up yet. Be realistic as to your situation and this cancer, but do not give up. This cancer is weird. It can go through super active growth followed by periods of nothing. It can not respond to one chemo and respond well to another regime. Have your doctors mentioned Xeloda yet? That is a common chemo for cc.I would also suggest getting a third and fourth opinion. I was told no surgery for a year. Was turned down in 3 hospitals. Went on chemo and had the tumor grow the whole time and then on a whim asked for my records to be sent to a fourth hospital. Wouldnt you know the 4th doctor decided that there wasnt much hope, was very risky but were willing to take a chance of at least opening me up and looking to see if they could help. I wonder where I would be if I asked for that 4th opinion earlier, but I know you cant think that way. So we are waiting for the big op in the coming weeks. The point is, if I had given up, I may not have this chance.
There are also several other options for treatment than chemo. Radiofrequency ablation (RFA) , Photodynamic light therapy (PDT) and proton beam radiation to name a few. Try asking your doctor if they can be used with you.
Sending warm hugs.
Kris
Hello, my name is Mayra and I am new to this site. My husband has been fighting this evil cancer for 7 months now. We have been married for almost 4 yrs. and have an adorable 14 month old baby girl. Kayla is the light of our life and she keeps us going. We are going to fight with everything we have.
My husband Eddie was diagnosed with cholagiocarcinoma in July of 09. His tumor is extrahepatic. We have not been told what stage his is in. We do know that when it was detected, his tumor was 4.6 cm. He was reffered to MD Anderson Cancer Center in Houston by his local oncologist, Dr. Shenkenberg.
Our first appointment to Houston revealed that sugery was not an option. He was scheduled for and ERCP and a plasic stent was placed in his bile duct. It was amazing how the stent helped. His jaundice was gone and his urine was normal again. In October, he began his first round of chemo. Gezar and Cisplatin. He went through 7 rounds of the chemo every two weeks with no big side effects other that the nausea and fatigue.
He had a repeat CT Scan in Dec. His tumor was now 6.3 cm. His oncologist at MD Anderson decided that he would add oral Tarceva to his chemo. The side effects were visible after the first two weeks. He broke out and got bad acne. It was so bad that his pillow would have blood stains every morning. Dr. gave him some stuff that really helped. After a month of that we returned to Houston in January for another CT Scan. His tumor was now 6.4 cm. He has already had his stent replaced 4 times. He has now stopped with the Gemzar/Cisplatin combo. He is now getting the 5Fu/Leucovorin/ Oxaliplatin mix along with the Tarceva. He was sent home with the pump for 46 hrs. He just started on that yesterday. He is feeling real tired. He has been in bed all day.
He is scheduled for the SirsPhere treatment on March 2. God willing that will the stop this monster from growing. Nothing has helped so far. Has anyone experienced this? We ask for prayers.
Faithful,
Mayra
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