pcl1029

Hi,
With deep sorrow for what you had experienced and heart felt message that you wrote above; I am sure all of the efforts by each of us,caregivers,like you; patients like me and moderator like Lainy(the poet) ,Marion and Gavin and others members will not be in vain.
May the Love of Christ,the Grace of God and the Fellowship of the Holy Spirit be always be with you.
God bless.

Hi,
You wrote:
“One more question has anyone had surgery after a resection to remove a lesion? I had the right side of my liver removed but I’m working with a full otherwise healthy liver except for the lesion.”

Yes, I had 2 liver resections within 2 years.(is that what you mean about the lesion?)
what lesion and may I ask how big it is;why cannot use RFA to ablate the lesion by the interventional radiologist if it is under 3cm? It the lesion too close to major organs ,artery or veins? The reason is simple, it is much easier to take than the chemotherapy you mention.and if it is not contraindicated,most of the time you will have little or no side effect.
The only thing I would consider chemotherapy first is if your primary diagnosis 24 months ago is extrahepatic or Hilar CCA instead of intrahepatic.

Below are some(not all) information for ABRAXANE( a protein-bound paclitaxel.belong to the TAXOL family—from drug manufacture web site.

Patients who have a severe allergic reaction to ABRAXANE should not take the drug again
If you have a very low white blood cell count, you should not take ABRAXANE. If your white blood cell count goes down while taking ABRAXANE, you should stop taking it until your white blood cell count returns to normal. If your white blood cell count drops very low, your doctor will lower your dose of ABRAXANE
People treated with ABRAXANE often have a side effect called sensory neuropathy, a numbness, tingling, or burning in the hands, feet, and ankles. If you get mild sensory neuropathy, you will probably not have to lower your dose of ABRAXANE. If sensory neuropathy becomes severe, you may have to stop taking ABRAXANE until it improves, and then continue treatment at a lower dose
Treatment with ABRAXANE can make liver problems worse. If you have liver problems, your starting dose of ABRAXANE should be lowered
ABRAXANE contains albumin (human), a derivative of human blood
If you are pregnant, or plan to become pregnant, ABRAXANE can harm your unborn baby. Women who may become pregnant should use effective birth control (contraception). Talk to your doctor about the best way to prevent pregnancy while receiving ABRAXANE
Because it is not known if ABRAXANE passes into your breast milk, you and your doctor should decide if you will receive ABRAXANE or breastfeed
Men should not father a child during treatment with ABRAXANE. ABRAXANE can harm the unborn baby of your partner
In a clinical trial, severe heart and blood vessel side effects occurred in approximately 3% of patients taking ABRAXANE. Side effects included chest pain, heart attack, fluid under the skin, blood clots in the veins or lungs, and high blood pressure. Stroke and heart failure were reported
The most common side effects of ABRAXANE included:
Hair loss
Numbness or tingling in the hands or feet
Abnormal heartbeat
Tiredness
Joint and muscle pain
Changes in your liver function tests
Low red blood cell count (anemia). Tell your doctor if you feel weak, tired or short of breath
Nausea
Infections. If you have a fever (temperature of greater than 100.4º F) or other signs of infection, tell your doctor right away
Diarrhea
Other side effects included vision problems, kidney problems, fluid retention, liver problems, and allergic reactions, and a decrease in blood clotting cells (platelets). Dehydration and fever have also been reported
Treatment with ABRAXANE can cause irritation where the medicine is injected (injection site reactions). When taking ABRAXANE, you should be monitored by your doctor or nurse to make sure no problems occur at the injection site
It is not known whether ABRAXANE interacts with other drugs, so be sure to tell your doctor about any medicines you are taking
ABRAXANE has not been studied in children or in people with kidney problems

Please see full Prescribing Information, including Boxed WARNING, CONTRAINDICATIONS, WARNINGS AND PRECAUTIONS, and ADVERSE REACTIONS.
God bless.

Hi,
what is the name of the “Low Dose regimen” called?
and how many chemo agents in that regimen?
and how long (total duration) and how many cycles you need to complete(frequency) for the entire course of treatment.

GEMOX,which you are on now ,consisted of Gemzar and Oxaliplatin.
Anorexia ,which is the side effects of both of the agents; each of them either used alone or in combination with other agents will affect your appetite.
For Gemzar, anorexia side effect is =16-19% and for oxaliplatin is 27-35% alone. Therefore the little appetite is not related to your 5 cm tumor but is related to the adverse drug reaction of the chemo agent.
God bless.

Hi,Trevor,
To response to your email also,( the 2nd one today) ,please check under the chemotherapy experience forum here title” Systemic chemotherapy for cholangiocarcinoma”
You will see about half way down the newer regimens used for this CCA including Avastin. remember there are NO FDA approved standard regimen established for treating CCA,including the reference standard of Gem/CIS or GEMOX . So your oncologist may be right if he just base on his/her institutional approved general guidelines to treat CCA instead of using what other clinical trial regimens such are mentioned in the experience forum that I put on this web site.
If you are still under Chemotherapy treatment at Mayo,it seems to me( just my observation for a day there ) ,they are not that enthusiastic in using newer targeted therapy or in clinical trials as compare to other institutions ; Mayo is in my mind a bit conservative on this front.
Email me again if you have question after reading the current regimens.
God bless.

Hi,
please apply for disability from the social security office as soon as possibe.
using the FIRST diagnosis date and try to get the government disability within 6 or 7 month. But the point is not the disability check but the time you will get the MEDICARE health coverage sooner than 65. If April 11 is the date of the first diagnosis then you will qualify for the early medicare 2.5 years after April 11,2011.and that can save you some money in insurance coverage.
God bless.