Re: Looking for Advice Regarding My Father
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Hi Susanne:
I am terribly sorry to hear about your father’s passing. I very much appreciate you passing along the information about the Spyglass and the University of Virginia. I am not sure if the Spyglass is the same as the Photodynamic Therapy; however, just by coincidence, my father’s doctor spoke to a doctor at the University of Virginia this week. I am not sure if he spoke to Dr. Kahaleh or someone other doctor, but my father’s doctor did like what the doctor had to say about an ongoing clinical trial at the University of Virginia involving Photodynamic Therapy. I am waiting to hear back from my father’s doctor regarding the details of the clinical trial.
Paul
Forza,
Sorry to hear of your Dad’s diagnosis. I lost my Dad to Cholangiocarcinoma a week before Thanksgiving and only two weeks after getting the bad news. We were able to get in touch, and a second opinion from Dr. Michel Kahaleh from the University of Virginia. He specializes in spyglass lasar therapy. I don’t know if it is the same as Photodynamic therapy. He is worth contacting as he welcomed looking at my Dad’s file, CT’s and records and got back to us within 24 hours. He was wonderful. Unfortunately for us my Dad was not a candidate. Perhaps your Father will fair better. All the best. God Bless. Don’t give up.
SusanneBon Journo, Paul and welcome to our wonderful Family! Sorry you had to find us but glad you did. My husband Salvatore (Teddy) did not have chemo as his tumor was in the bile duct valve so I cannot help you there but if you go to the Search space at the top of our page and type in Xeloda I know tons of posts will come up about that kind of Chemo. It sounds like you have done everything perfectly right for a situation that is perfectly wrong! Blood infections seem to go with the territory as well. You are seeing top doctors in this field, but keep searching until you are totally satisfied. Feel free to come here to ask, vent or advise. Amd please keep us posted. CIAO
Kris, Margaret and Gavin:
Thank you for your prompt responses and very kind words of encouragement. I will definitely look at your earlier posts.
My father’s billirubin is about 15 currently. The doctors believe that the plastic internal stents inserted last week are working since his billirubin levels are stable and not fluctuating. He is, however, hospitalized and on IV antibiotics to fight the blood infection. He also has received some blood transfusins as he is anemic. The doctors believe tha the anemia may be related to the rounds of gemzar/cisplating he received.
In addition to starting him on Xeloda once the blood infection is resolved, the tentative plan is to swap out the plastic stents for metal ones in about a month. (The doctors tried to put in metal stents last week, but could not get them in because of the size/location of the tumor.) I have read that the metal stents work better, but I think I also read that they cannot be removed.
I have not yet spoken with his new oncologist, but I plan to ask why my father is not a candidate for radiation or some other type of therapy in the event Xeloda fails.
Paul
Hi Paul,
Welcome to the site, although I am sorry that you have to be here. Please come back often, ask any and all questions that you have and you will get a ton of support from us all.
I know how you feel right now as I went through the same feelings when my dad was diagnosed. He was diagnosed in 2008, his CC was deemed inoperable and he was 64 at the time and was otherwise very healthy. Surgery and radiation were ruled out from the begining, and as Kris says PDT was my dads treatment. I can’t help you with your chemo questions as my dad never had chemo. His treatment plan was to have the PDT first with a metal stent inserted at the same time, and then at some point down the line see if chemo would be an option.
If you want to you can search for earlier posts of mine regarding my dads treatment and experiences with PDT, or if you have any questions please feel free to ask me and I will do everything I can to try and answer them if I can. I do like what you say about you and your family refusing to give up, a positive attitude will help you all in this fight. Much Forza indeed!
My best wishes to you and your dad,
Gavin
Paul:
Welcome to the best site on the internet that no one really wants to join, myself included. You can read my husband’s story under my login name mlepp0416.Tom has not yet taken Xeloda but we have $3000.00 worth of those little pills sitting on the shelf. If they are able to stent his liver now that the radiation has shrunk the inoperable tumor then he will be able to start on those pills.
Tom’s tumor is inoperable because it involves the hepatic artery as well. However, his bilirubin level was up to 24.7 when he started radiation treatments. They had to put an external drain in becuase they could not get past the tumor with an internal drain. After 28 radiation treatments, the tumor has shrunk and his bilirubin level is down to 9.1. They will be trying to stent his liver next week.
I can’t answer all your questions but it sounds like you are on the right track. But YES, certainly keeps asking questions, seeking other opinoins!!! As many as you need to! No one has an expiration date stamped on the bottom of their feet or on their butt!
I’m sure that there are other chemo regimes that can be used if Xeloda does not work. It’s the first chemo drug that they wanted Tom to start on and in reading posts on this site, it appears that many people are put on that drug for this type of cancer.
Go with God, prayers coming your dad’s way from Wisconsin.
KEEP KICKIN’ THAT cancer!!
Margaret
Paul,
Some people do have success on xeloda. There are other chemos as well, but they tend to be harsher with fewer results. Gavins father had the photodynamic therapy and if you search under his name, his posts will give you more information.
Welcome to the site by the way, We are a close group and are very supportive of each other. If you have more questions, ask away. We have many members and between us we usually have the information if you wait long enough for people to pop in. Let us know how it goes.Kris
Hi:
I am newly registered, but have been following the discussions on the cholangiocarcinoma.org website since my father, age 70 and otherwise healthy, was diagnosed with CC (Klatskin) in July 2009.
I want to get to my questions, so I will try to make the background as brief as possible:
1. My father was originally treated at UCSF, where they first said he was a candidate for resection, and then no.
2. Not feeling 100% confident with our experience at UCSF, I sent my father
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