primary biliary cirhosis & cholangiocarcinoma & glass bead radiation
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Hi Rick … It’s been quite some time since I submitted my wife’s situation. She’s been told by the experts at university of washington medical center that her condition is such that if they removed the tumors, there would not be enough liver left to allow her to survive. it’s been 27 months since her surgery when they removed some of the tumors. At that time she was sent home for palliative care in that cholangiocarcinoma at the stage she was in was deemed hopeless. I know there is always hope. She gets very tired and all that but somehow remains cheerful.
Doug
Doug,
I am in a very similar situation to your wife. I have Primary Sclerosing Cholangitis which is VERY similar to PBC. It has damaged my liver quite a bit, but not to the point that I was on the transplant list. My cancer was detected about a year ago and it was eventually discovered that I had metastases so surgery was no longer an option for me.
I have been consulting at Mayo Clinic and 11 days ago I had a treatment called Theraspheres, which is the glass beads that you refer to. You can look at my experience under a seperate post in the “General Discussion” area. The Dr’s at Mayo were not too concerned about my liver dysfunction due to the PSC, but they did mention that it would be harder on me than on someone with a more healthy liver. I imagine this would be the case with your wife as well.
So far, the treatment hasn’t been too bad. Today was a rough day, but I am sure that I will improve soon. The literature varies and some say it takes 10 days to recover while others say it takes up to 2 weeks.
The nice thing about the treatment is that they can target all of the tumors so your wife could get local treatment for all of her tumors. But it might mean several treatments to get radiation to them all.
Best of luck to you.
Rick
I have hep c cirrosis and cc on connection of bile duct and liver Awaiting the therasphere insertion date (angio done) How sucesseful is the treatment and can I really get any kind of quality of life afterward. don’t want to spend last days as a weak cripple.
Hello Lainy, You’re indeed right reference retirement. We’ll check out Cyber Knife with the surgeon at the University of WA Medical Center and see what he says. He informed us two days ago that Margie cannot withstand surgery. She has 5 tumors in the left lobe. They would have to remove 5 golf ball sized sections of tissue to reasonably expect to get all the cancer. 21 months ago he (James Park MD) removed 2 sections of tissue of the above mentioned sizes and the cancer has returned in those areas. Thanks again Lainy. I’ll check the search machine.
Doug in Edmonds WA
Hello Doug & Margie and Welcome to our Family. My husband had Cyber Knife last year and I know the tumor has to be under 7cm, but it’s worth asking the doctor about. It is just amazing and only takes 3 days, in most cases. Teddy is 77 now and was DX 4 1/2 years ago. Boy, we sure didn’t ask for this with our retirement, did we? There is a search machine at the top of the page and type in any word to get some advice on that subject. Good luck and please keep us posted.
Hi Doug,
Welcome to the site, although I am sorry that you have to be here. I have no knowledge of glass bead radiation, so I can’t help you with this. But I know that someone will be along soon who can help you with this question. In the meantime, there is a search function at the top of the page which you can use and I am sure that you will find some posts there that will help you.
My dad was diagnosed in summer 2008 and his CC was inoperable. His doctors ruled out radiation from the start with the possibility of trying chemo later. His treatment was Photodynamic therapy PDT with a metal stent inserted also. I know others here have had other treatments and I know that they will be along soon to share their knowledge and experiences with you. I hope that you will come back often Doug as you will get loads of support and help from us all.
My best wishes to you and Margie,
Gavin
Hello Dog and Margie and welcome to our site. I am happy that you have found us. TheraSphere (glass beads,) SIR-Spheres, or, Cyberknife treatment have shown to be successful with several of our members for localized tumors in the liver. As you have mentioned, the search function will lead you to the many previous discussions shared by others. I am sure that much personal experience will be shared with you also. I am wondering, had Margie been diagnosed with CC five years ago or, had other symptoms deemed for her to be on the wait list for a liver transplant? Please, continue to put out your questions because, everyone one on this site gladly shares their experiences with each other. We learn from each other therefore, your knowledge is equally as important to us.
Best wishes,
MarionMy mistake … the tumors were not golf ball size. That was the size of the tissue ablated. The tumors were described as nickel sized.
Hi, My name is Doug Lofstrom (age 73) and my wife is Margie (age 67). After waiting 5 years on the liver transplant list at the University of Washington she was diagnosed with cholangiocarcinoma. She was removed from the list and ablation surgery wah scheduled. The surgeon (Dr James Park) sent her home for paliative care. That was 21 months ago. He had removed 2 golf ball sized tumors from her left lobe.
This last week and mri revealed 5 new tumors. Dr Park along with a U of W radiolgist determined surgery is out of the question. Chemo is quite doubtful as her liver is so weakened from the PBC. He suggests looking into “glass bead low level radiation” . That is what I am doing now by entering this wonderfully informative site. I’m hoping that someone who has PBC and CC has had experience with glass beads.
Doug
Edmonds Wa
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