May 15, 2006 at 4:50 pm #13865kathyjMember
I’ve had experience with the radiation but it was in preparation for a liver transplant. I am a paitient at the Mayo Clinic in Rochester. I was diagnosed with cholangiocarcinoma (Klatskin tumor) in April, 2005. Last summer I received two doses of radiation daily for 15 days, followed by implanting the radioactive seeds directly on the Klatskin tumor which was wrapped around the portal vein, too. The radiation greatly shrunk the tumor but also caused some scaring and damage to my stomach. We didn’t discover the damage to the stomach until May, 2006. I had the transplant in November. My hemoglobin kept falling down, when it gets to 8 or below then they want to give me transfusions, I’ve received four transfusions of 2 units each since the end of March. This last time I discovered blood in the toilet after a bowel movement so went to the emergency room here in Olympia and they diagnosed the damage to my stomach, blood was seeping from blood vessels that had been damaged during the radiation. I then was sent to Virginia Mason Clinic in Seattle to have the area laser cauteized. I will have another blood test tomorrow to see if the hemoglobin level has stayed up this time, it was 11.3 last Tuesday, which is good for me.
Perhaps you should contact the Mayo Clinic to see if anything can be done for your mother, perhaps a liver transplant although they don’t usually do it if the cancer has metastisized. I, too, had the metalic stents placed in my bile ducts after the tumor was discovered April, 2005. They functioned well and were removed during the transplant in November, 2005. They did leave 1/2 of a stent that was so far into the pancreas that they didn’t feel comfortable removing it.
The Mayo Clinic is the only facility in the US that is authorized to use a cadaver liver for a transplant into a paitient who has cholangiocarcinoma (Klatskin tumor). Go to their website and check it out, have your physician call and see if they will let your mother come for an evaluation to see if she qualifies for a transplant. I was fortunate, my daughter donated her right lobe of her liver to me so I didn’t have to wait for a cadaver liver. Not everyone is so fortunate, though.
Good luck with your physicians and your mother’s health. You feel so alone out there but remember there are many others who have had similar problems. I feel so confident that if anyone can resolve my problems, that the Mayo Clinic is my best shot at long term survival.
Let me know if I can help with any of your questions.
Liver Transplant 11/16/05May 14, 2006 at 10:42 pm #13864
A scan about 6 weeks after the cyberknife showed that the tumor had begun on shrink. We are hoping that the trend will continue and the main tumor is dead. There were other spots in the liver that turned out to be abscesses. My mom’s on a 14 day antibiotic course to fix that. In the meanwhile they are planning to replace the plastic stent in the bile duct with a more permanent metallic stent.
She is currently very nauseated, and eating very little. Any suggestions on what to do? Is Prometazine good for nausea? Thanks for any feedback.
Also I plan to take my mom to her home country and trying to figure out the plane ride.Because of her muscle condition she is completely unable to to anything on her own. She will need a travel companion as well as pretty much lie down for the entire trip. What airlines and options exist for such travel? I am prepared to fly business class. Thanks for any tips pointers.March 25, 2006 at 6:12 am #13863
My mom had the Cyberknife (stereo tactic radiation therapy) last Tuesday. She gave us a bit of a scare immediately after the 1 hour treatment session when her temperature and blood pressure shot up. But they came back down within an hour but the docs were puzzled by the reaction because it was unusual for Cyberknife. They said the the procedure went well. They will follow up with a scan 6 weeks later. She’s okay now, running a temperature on and off. I am hoping she’ll come out of this quickly.
However in the meanwhile a PET scan has revealed that the cc has metstasized into the liver (4 spots). So the Cyberknife at this point is only going to be palliative. They had ruled out chemo earlier based on her health. Not sure what the med onc doc is going to suggest next. Anyone experience a similar situation?March 4, 2006 at 6:48 am #13862
Thanks for the update.
My mom is being treated by Dr. Goodman too. In her case since the tumor is a single tumor outside the liver they are proposing a single fraction radiation dosage of 30 gy to the tumor (singel sitting). Dr Fischer the medical oncologist has decided against any supplemental chemo based on my mom’s physical condidtion. So its going to be only Cyberknife at this time.February 28, 2006 at 4:57 pm #13861mzpatzeeMember
I was also seen at Stanford for the Cyberknif technique. I saw Dr Karyn Goodman and she thought I was a very good canidate for the proceedure. They would put me on the oral chemo “Xoldia” (sp) to weaken the cancer and then give me six weeks of cyberknife, two hours a day, five days a week. This is a very precise proceedure and from what I have heard has had amazing results. Dr. Goodman thought she could help me by diminishing the size of my tumor and by zapping the many small spots on my liver. I was truly excited to get started on treatment but now my insurance company doe not want to cover it and has denied my claim. Be sure to check with your insurance company for available coverage. I hope this info helps and that youo get better soon………….PatFebruary 28, 2006 at 4:31 am #13860
Okay I have more information.
Cyberknife is another name for “stereotactic body radiation therapy” (SBRT). This treatment has been used successfully brain tumors. However the newest equipment which was co-developed at Stanford has capabilities that allow it to be used for “extra cranial” cancers. It has been used successfully to locally contain pancreatic cancers — phase 2 clinical study has been published. Now they have a phase 1 clinical study underway at Stanford for liver related cancers including CCC. Since the study is underway there are no published results, but so far 18 patients are undergoing treatment and according to the radiation oncologist, things are going well. There was 1 patient with a 7 cm tumor that has been locally contained. While the prognosis of this treatment is not yet available, the benefits are:
– single treatment sitting where the entire dosage is administered.
– minimal side effects due to radiation itself.
– collateral radiation damage in my mother’s Klatskin (3.5 cm) is minimal as it is away from the duodenum etc..
We are yet to meet with the medical oncologist to see if a chemo is needed to supplement. They will do a planning scan in one session and a week later the actual radiation will be done.
Keeping fingers crossed.February 10, 2006 at 7:39 am #50
My mom has a Klatskin’s tumor (5 cm). No metastasis visible in CT Scan. We met the Stanford Tumor Board. They came back to say that her tumor was not resectable because it encased the portal vein. However they proposed to treat it with stereotactic radiosurgery (Cyberknife). In this procedure they mount a whole array of radiation guns and point it at the tumor and deliver a full dose in 2 hours. The guns are mounted on robotic arms to adjust for movement caused by breathing etc. The radiation oncologist Dr. Albert Koong claimed that this 2 hour procedure is all that is needed. Side effects for 24 hrs (nausea etc..). He also said that this particular tumor was ideal for this treatment because of its location and size — the exact opposite of what we heard from the surgeon.
Is this too good to be true? Has anyone heard/experienced this procedure? I understand that this has been used effectively for pancreating cancer. Any information on how this has fared against cholangeo and liver cancers?
Some of the questions I have been prepped to ask are:
– what happens to the encased portal vein? can it thrombose?
– how are the hepatic/bile ducts affected?
– what happens to the radiation passing through the liver?
Any thoughts, comments, information greatly appreciated.
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