Update:

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.

Update:

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?

3

(7 replies, posted in In Remembrance)

Mike,

My deepest sympathies are with you.

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.

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.

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.

Today when we were talking to the surgeon about surgical options for my mom, he said that surgery was not possible because of the tumor having wrapped the portal vein and hepatic artery.  Now when I asked whether it would help to surgically remove as much of the tumor as possible so that radiation/chemo could work on the rest, he said that it was useless.

I am sure he is right, but why is it so? Doesn't it help to surgically reduce the size of the tumor so that radiation/chemo has "less work to do"?

Sharlene,

The description of your husband's case sounds very much like what I heard about my mom today from the surgeon. This was her first visit with the oncology surgeon after the tumor was seen in the CT Scan. He said that it was a Klatskin (sp?) and not operable because it was around the portal vein and the hepatic artery. He also said that the left portal vein was completely constricted.

I presume your husband went through a similar situation. What was the next step in determining the treatment. We have a interview/preso with the tumor board in a few days and I want to be prepared with all the questions to ask.  The surgeon in our case recommended radiation with chemo assist rather than chemo. Any thoughts?

Thanks.

9

(6 replies, posted in General Discussion)

Anyone engage with Dr. Nancy Asher at UCSF or Dr. Peter Norton at Stanford?

Thanks.

10

(6 replies, posted in General Discussion)

Thanks for the tips. My mother is seeing Dr. Norton at Stanford to eval for surgery and next week she is seeing the GI oncology board. I am assuming Dr. Fisher is on the board, but I will call them up to confirm.

Any doc name recommendations at UCSF?

Will keep all posted. Thanks.

11

(6 replies, posted in General Discussion)

Hello all,

First of all wonderful site! Thanks.

My 70yr old  mom had a CT Scan and ERCP done this week. The biopsy results have not come back but the gastroenterologist is pretty sure the diagnosis is cholangiocarcinoma. He says the tumor is 5 cm, in the bile duct. He has temporarily stented one of the ducts.

I am sure over the next few weeks we will be presented with an array of options and decisions. I have been reading the postings on this forum and had a few questions:

a. My mom has a form of myositis called Inclusion Body Myositis. The gastro doc says that cholangiocarcinoma has been associated with many myopathies. Is there anyone on the forum with the same condition?

b. Her myositis makes it difficult for her to walk (legs, thighs are weak). She is slowly losing strength in her arms also. Given this, any opinions on how it affects treatment options?

c. We are seeing docs at Stanford. What are the best known locations for treatment of this condition?

Thanks for your responses. God bless you all.