Finally***almost
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Hi Lu,
Sorry to hear of the official diagnosis of Klatskin, but glad that you finally know what you are up against. I don’t want to give you false hope, but there is a treatment option for non resectable patients that involves radiation/chemo followed by a liver transplant. It is commonly done at Mayo Clinic, and a few other major centers. If you haven’t looked into this, you should contact Dr. Gregory Gores at the Mayo Clinic in Minnesota to see if your dad is a candidate for it.
Regarding the biopsy, I would also urge some caution on allowing them to perform surgery to get the biopsy as it can sometimes causing seeding of the cancer. If this happens, then treatments such as the transplant protocol and PDT may not be options any longer. In fact, I am fairly certain the transplant protocol would be out as an option because they don’t like patients to have any “surgery” in the affected area before the protocol begins.
I hope this helps. Best of luck to your Dad and your family.
Rick
Hi Lu. I think it is very hard to say what to expect as everyone reacts so differently with each procedure. Teddy had 25 radiation treatments and never got sick. Towards the end he got extremely tired and it lasted about 2 months and then he recouped. I would guess mostly everyone gets very tired. It also depends on the chemo cocktail. I put a halt on everything in our lives and we only did what he felt he could do. To me the best thing we can do is to relieve them of any outside pressures and let them go at their own pace. They know better what they can do than we know. Just be there with a smile and lots of support. How can he miss with a family like yours?
We do too! Our family and our belief is awesome that my dad can be the guy who lives 10 years for no other reason than he wants to! I just want to know what to expect so we can help him succeed!
}Hey Lu2 – I’m going on 28 months of survival after diagnosis with a 6 cm Klatskin tumor. Sure I’m stage four with mets to the lungs, but by golly, I’m not ready to die yet.
I have had 27 months of different chemos, operations, radiation, and hospitalizations but I’m still here and fighting with all my might.
I just heard a survival expert say that the keys to survival are FAITH and FAMILY. I believe it.
Hi Lu,
Thanks for the update on your dad. I can’t help you with your questions on what to expect on radiation and chemo as my dad never had either of these treatments. Radiation was ruled out from the start and dads specialist wanted to go straight for PDT with the possibilty of chemo at a later date. He also said that the side effects of PDT were far less than that of chemo and quality of life was a big issue for dad at that point. If your dad does do the PDT, do you know where it will be done? If you want to know anything specific about my dads experiences with PDT then please just ask me and I will help if I can.
My best wishes to you, Jen and your Dad,
Gavin
Lu2,
Welcome to the best CC site on the internet. Like me, I’m sure that you did not want to join this site.
I am my husband’s caretaker. You can read about his journey with CC under my login name mlepp0416 (My husband and cholangiocarcinoma)
Tom was also feeling fine and had no sypmtoms back in Mar 2008 when his routine blood tests revealed elevated liver enzymes. In May 2008 it was diagnosed as CC. In June 2008 3/4 of his liver was removed. After a 7 1/2 month recovery (he had a bile leak after surgery) everything was progressing well. In Nov 2009 he developed jaundice. A new tumor in the remaining biliary tree also involving the artery. Inoperable. Bilirubin climbed to 24.7…
His oncologist told him to basically go home and die, and that he maybe had 6 months. We got new doctors and after 28 radiation treatments his bilirubin level is now down to 8.1. The journey presented many twists and turns and many bumps in the road. But we are fighting the good fight.
No one has an expiration date stamped on the bottom of their feet or on their butt!
My advice would be to do all the research that you can. Ask all the questions that you can think of (write them down as you think of them!) Get 2nd and 3rd opinoins!
Get your dad to visit this site and read the success stories, or print them for your dad. Many of the people on this site were told that they have 6 months and many of those same people are proving their doctors WRONG!
There are many oncologist who have never encountered this type of cancer and it seems like they use the 6 months because they don’t know any better! Tom is now in month three and things are starting to look better for him. His new oncologist tells us that the tumor has shrunk. He may never be ‘cured’ but they feel that they can get him into remission! His next step is to get an internal stent placed in the liver and then he can start Chemo (Xleoda) which is a chemo drug that I see on this site that many CC patients are on.
Stay optomistic! I’m a firm believer in the power of prayer. Spend quality time with your dad, be there for him. Even if it’s just to sit there and hold his hand or watch TV with him. Remember that whoever is his main caretaker may need a break now and again so offer to help clean house or sit with dad so that person can go do something fun.
Our kids come over about every two weeks and just clean the house! We even get the grandkids involved with dusting and vacumning. They know that with caring for Tom and working full time that I simply do not have enough time or energy left to do simple things like housecleaning! It’s a godsend let me tell you!
Make some meals that can be frozen and then put into the oven for a quick easy meal. Tom likes pea soup (it’s easy on his stomach) so one of our friends makes pea soup and freezes it in small containers. That way when I’m at work, Tom can heat it in the microwave and have it for lunch.
All these little inexpensive things with help with your dad’s (and his caretaker’s) Quality of life.
Prayers from Wisconsin are coming your dad’s way!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
So we finally have some answers almost or as good as we are going to get! Dad has a Klatskin tumor. It is wrapped around the hepatic ducts and the portal vein. We have seen 2 surgeons who specialize in this and have cc experience and say he is not a surgical candidate for resection. We tried to have a biopsy done with endoscopic ultrasound but that yielded nothing. We met the oncologist last night! Fabulous Dr. Kaplan finally! He is 99.9% sure it’s a Klatskin has never seen it NOT be a Klatskin tumor but is going to check with Dr. Hart to see if they can do major surgery to perform the biopsy. Since he says he has seen almost everything and he wants to be 100% sure we are proceeding with Radiation and possibly PDT but waiting for chemo. Dr Kaplan already uses Gemzar/Cisplatin and has been for years. He has one pie in the sky CC survivor going on 8 yrs with tumor…back down here we are positively hoping for 1-2 and more depending on how dad reacts to treatment. Statistically dad has 6 mo. left if he does nothing but he feels so good. I think it’s hard for him to wrap his head around this because he feels perfectly normal. Weird to be told you are dying when you work, exercise and play as normal! Can anyone tell us what to expect on Radiation and chemo? How we can help and quality of life issues? Dad is healthy as a horse so we are all expecting the best! And Jen04 and I know everyone is unique and everyone reacts differently hence the different experiences but maybe just some idea so we can help him through!
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