pcl1029

Hi,
I agree with Susie. and above all, I am just a patient and not a doctor.

If the tumors are only on the left lobe and just one or 2 in the right lobe without metastasize to other part of the body ; If I were you, I will definitely seek a 2nd opinion on surgical oncology at a larger university medical center like Susie suggested or send CT disc and reports to Dr. Kato at New York Pres. Hospital first before taking the chemotherapy of gemcitabine, irinotecan and panitumumab. This regimen is tough to take;side effects include cardiotoxcity,nephrotoxicity(kidney),cutaneoustoxicity(Skin) and neuropathy.

Surgery is the only possible cure for cholangiocarcinoma. I am a patient of ICC for 45 month. Recurrence is high especially ICC(>75%); and if so, liver resection first and adjuvant chemotherapy to follow is a logical step to treat this cancer if possible. I am just afraid your oncologist wants you to try that regimen because s/he may show great interest on that regimen first compare to other available Level 1 regimens which have been used for a longer period and show efficacy. If chemotherapy is a must before surgery,I will ask for the level 1 regimen like Gemox or Gem/Cis if the oncologist at the the larger medical center agreed.
Since the last scan was in November;it may be of interest for you and the surgeon or liver specialist to get a 2nd CT scan at the consulting hospitals for the most up-to-date condition of your liver in order to make the final decision by the surgeon. Please don’t wait too long and missed the opportunity for surgery.
God bless.

Hi,Annie,
I think you should let the medical professional take care of your 46 old brother’s situation first;let them to see what kind of medications he should take to increase the “blood count” before using injections to help boost the counts.
First, there are different injections for different conditions. I am not a doctor,but I know about injections in the pharmacy. You did not mention which one(ie; WBC,RBC Platelets,Hb etc.)that had low blood count in any of the messages you wrote on this board. You only mentioned about folic acid and vitamin B12 prescribed by the doctor and most likely were for anemia .

“fluid in the belly” as you put it ,in general,will not affect that much in the decision making process for the oncologist. Up to 21 liters can be safely removed from the patients in the hospital setting without complications. However most of the amount that removed are much lower than that.

Intrahepatic bile duct cancer(the cancer started in the bile ducts in side the liver) is what your brother has; it is different from the liver cancer(ie: in cytology and histology when under the microscope.)

Missing one or two treatments may not make much of the difference in the plans of oncology treatment. It may help your brothers “blood count” back to normal and can receive the chemotherapy.

Nobody can recommend oral chemotherapy to you except your oncologist; Oral chemotherapy agents and especially the targeted therapy agents taken by mouth are potent medications( ie; both in effectiveness and side effects) and should not taken them lightly or think of them of less potent than the IV formulation.

I hope my specific answers to your questions will help both of you and your brother to develop a more positive attitude toward the treatments and outcome of this diseases.
Finally,I can only speak for myself, positive attitude helps me a lot in dealing with this cancer for the past 44 months; it change my outlook toward my disease and helps me to start a new journey for the rest of my life. It is no fun,but take the best that you can have and prepare for the worse that you cannot control through communication with others and learn about the disease. You will never know what will lies ahead of you,but if you try, I am sure your effort in prolonging your brother’s life will not be in vain.

God bless.

Hi,
Yes, but it is solely based on my experience. You can start asking Dr. Gores himself ,(he is one of the top doctor in the research of liver and related diseases,) for consultation first and if needed , he will refer you to appropriated departments for consultation.
Mayo likes to do MRCP so, if you decide to go there, you don’t need to have MRCP at IU in order to save some money.
BTW,where do you live?
the link below is related to Pet and CT scan understanding.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=47365#p47365

God bless.

Hi, Wisdom,

“last labs low sodium, white cells, platelets, and total protein Ca19-9 580. I feel tired and have moments of dizziness. Abdomen distended slightly – no fluid. Md no longer following me as I’m not being treated….”

Base on what you wrote,dizziness and tiredness may be related to anemia (low RBC,H & H) ; most doctor can recommend something according to the Hb level.
Increase sodium intake a little bit may help; Low white count can be increased by using injection medication like G-CSF;low platelet can be helped by platelet transfusion and pay close attention to drug-drug interactions if your husband take other medications;low protein can be helped by Ensure, soy milk, milk and other protein products or albumin IV infusion. Ca19-9>129 is indicative of CCA disease but of course Both CEA and Ca19-9 are also related to the inflammatory state of the body systems in your body, so it is not the absolute indicator for CCA.

I will seek second opinion on medical oncology or hematology to further the search for treatment options; it is also not a bad idea to see a hospital nutrition support team member to adjust your diet to help your condition.
I am ,like you,just a patient and not a doctor;and since you did not reveal where you are located, I cannot recommend the nearest places for your treatment;you can ,however,find them in the experience forum of hospital section on the this web site. I may add, a disease like CCA is more like a chronic disease ,like hypertension; it cannot be ignored,it requires taking medication and treatment constantly to prolong the live of us who suffer CCA.
God bless.