Confusion over report

esa…..our website offers information on the clinical trial mentioned by you.
http://cholangiocarcinoma.org/professionals/research/clinical-trials/

We have not heard from you for quite some time now and hope that you have recovered nicely from surgery.

Hugs
Marion

My dad was treated at Mayo. Palliative care means they don’t think they can cure the cancer. That is what they think or have experienced.

The doctors told my dad that he would have 6 month without chemo and 1 yr with chemo. He did have to get his stent replaced about every 2-3 months and he did not have surgery. They were correct with his diagnosis although they could not really determine if he had leukemia also…I guess in the end they decided he did also have chemo.

Kris…Thanks for the additional information. You are certainly at one of the big centers and one that deals with CC. As Lainy told you, that is where I had my surgery and ongoing followups.

First: Would you mind sharing the name of your oncologist and surgeon?
I was seen by Dr. Domingo, on fellowship in oncology….and as such, probably not the first line doctor I should have had….but my case was very clear cut once I was seen…surgery….everything with clean margins and no mets, so it is simple followup scans and labs with the adjuvant chemo I had here back at home. I came to really appreciate Dr. Domingo, who is extremely sharp and compassionate, an unusual combination in the medical field. However, his fellowship will be ending soon after my next set of scans in Nov, so I will be looking for another Mayo oncologist to follow my case.
There is a Dr. Gregory Gores there at Mayo who is extremely knowledgeable about CC and I would probably start there for myself as a possibility, though I suspect I would get one of his fellows under him with Dr. Gores overseeing everything. You might consider having your file looked at by Dr. Gores .
MD Anderson …..Yes…one of the best in CC…and there are 2 or 3 Drs there who specialize in CC….and one keeps coming up all the time. Somebody here help me…I can’t remember his name (chemo brain has attacked me again). From everything I hear, he is very open to consults and deals with trials as well.
St. Louis…..again…can’t remember the name of the hospital, but the Dr. is Dr. Chapman. While he has developed liver transplants for some patients who qualify (you and I don’t because we have intrahepatic)….he is another guy who really rocks when it comes to knowledge about CC and I think if you send your scans , etc to him, he will evaluate maybe without you going there.

BTW…..I live in Marion, Iowa, (connected to Cedar Rapids) and am just 3 hours from Rochester and probably about an hour and a half or so + from where you live if I have the location of your town right…….just south of the Twin Cities? We always joke about Marion/Cedar Rapids being the Twin Cities of Iowa. ))

Julie T.

Kris….physicians use a variety of staging systems. As a patient, you are entitled to explanations, hence I recommend your adding this to the list of questions to be asked in the upcoming meeting.
After all, you are the patient with this cancer, and you must be part of the decision making process and therefore must be informed so that you can make educated decisions.

Palliative intent chemotherapy – This is a vague description and often times cause great concern to patients and caretakers alike. This is what I have learned:
1. Curative resections are just that – patient is cured from this disease.
2. Those patients resected but left with residual disease are treated by means of chemotherapy, radiology and/or a combination of both or other biological, immune therapy(still under investigation) or non biological agents. This is called “palliative intent” meaning that the patient is unlikely to be cured, but feasibly he/she can achieve disease remission. This is where I think of it as a “chronic disease” in that patients may become resistant to a drug or treatment (maximum benefit) and then move on to another form of treatment.
3. The term – Palliative Care – is somewhat confusing, but for the intent of this conversation, patient’s symptoms are addressed in various ways i.e. pain medication, radiation, psycho-social care, etc. in other words: everything designated to preserve quality of life.

Having said that, palliative care should be part of patient care at all times for patients undergoing treatments as well as for those focused on symptom control only.

Please take a look at the below link:
http://palliativedoctors.org/faq

To further help you understand this cancer, the following link will be of great help to you:
http://cholangiocarcinoma.org/newly-dx/

I hope this helped.
Hugs
Marion

Kris….I hope that someone else will be coming along soon to give you more info, but I will try to answer your questions. Other board members…feel free to add anything to this or correct me if I am wrong.

Stage IV B means that the cancer has spread from the localized area of your liver to a more distant area of your body…and in your case…the lymph nodes of your esophagus area.

Palliative intent chemotherapy means that they are doing chemo to lessen the symptoms of the cancer and hopefully slow it down, but they don’t feel it is stopable or curable.

What else to ask your oncologist….I’m not sure…but someone else may come on board with some insight for you.

If I saw those three words, “Paliative intent chemotherapy,” I think I’d be running fast for 2nd, 3rd, 4th or more opinions.

Has your oncologist not mentioned trying to get into a clinical trial since surgery could not be done and chemo thus far is showing progression? Why not? THAT is one question I would be asking for sure.

If you don’t mind sharing…where are you being treated? One of the really, very, very important things about treating this cancer is finding a doctor and a big medical center where they are very familiar with this rare cancer and regularly treat it. There are many good hospitals….and great doctors….but they don’t necessarily have the expertise you need.

Julie T….aka Iowa Girl