pcl1029

Hi,
It is a small world you had to join this site. I am sorry about your young sister.

Chemotherapy is of limited value to those who has advanced CCA (ie:stageIV after resistance of chemotherapy .)and have mets to other parts of the body.
At this point , discussion of ” quality of life ” vs ” quantity of life” may not be a bad idea to increase the comfort and well being of the patient.
Try to enjoy every moment you can with your sister to create the long lasting memories that you can share for a long time.
God bless.

Hi,
where you get the alternative treatment;in a hospital or clinic?
I think the normal is 5-17 in other country.
Recently we had a member who has Gilbert’s disease and his bilirubin is very high; but now is back to HIS normal of 4.1.
God bless.

Hi,
welcome to our small world.
1. Gemcitabine and Cisplatin are the current standard of choice of Tx for cholangiocarcinoma(CCA). there are still many other regimens to choose from if this one is not suitable for your mom in the future.
Gemcitabine is easy to take,minimum side effect like low platelets count is one of the the most stand out side effect. Nausea and vomiting,loss of hair,fatigue,body ache,nephrotoxicity(kidney);hypomagnseium and hypopotassium are side effects of cisplatin. Nephrotoxity is accumulative and therefore ,depending on the health of the patient,after certain # of cycle(ie: 6 cycles) ;review of the regimen may be a good way to protect esp. the kidney if the side effects cannot be tolerated well.
To start the chemotherapy each time overnite is a good idea and I don’t know why we cannot do this here in the States. It is less anxiety to the patient and they can sleep thru some of the unwanted side effects of the chemotherapy.
2. 63 years young and otherwise healthy individual after left liver resection, (even had a lympth node positive involvement )has a good chance to live long enough for the next new thing to come in radiation oncology or/and medical oncology to extend our lives with much less side effects and enjoy God’s mercy for those who suffer. I do not see a “magical pill “will be discovered in the near future like penicillin for infection that provide a “CARE” for us.
3. Continue to pursuit other options such as radiation treatment ;read and learn about it and other development of treating this CCA is the way to handle this disease. I am a CCA patient for 35months,like your mother,I had the left lobe completely resected;on gemcitabine for 14 months;off the chemotherapy for 6 months,CCA came back;RFA and chemoembolization; then re-resection again.Now is only on Xeloda(pro-drug of 5FU);and the rest is up to God’s mercy.

what I am trying to say is this; CCA is a long and winding road to navigate ; it require courage,knowledge and patience; it is not easy but it can buy time for your mother.
keep in touch,
God bless.

Hi,

Since you have Gilberrt’s disease;bilirubin(so does the jaundice) will go up or down depending on factors like infection,inflammation;stress level among others. I suspect you may have an infection(ie: like having a cold) prior to or during that period where your bilirubin went way up.

If CA19-9 is normal and the Cat scans are clean as what the report you had mentioned above, I don’t think you have any problem with regard to cholangiocarcinoma(CCA) at this point.Please remember,I am not a doctor and I could be wrong,I am just,like you, a patient.

But as you know,CCA in the common bile duct or the extra-hepatic ducts (the stricture) require expert or GI specialist who FAMILIAR with this disease to make the call;that is why a 2nd opinion like at UC San Fran is important before you choose to have the Whipple prodedure done.

My suggestion is :
when you do the next ERCP;ask the doctor to order a CEA lab test for you along with CA19-9 in a month or so; and a PET Scan of” the chest,abdomen and pelvis” too .
Get a 2nd opinion before any big surgery like the Whipple .
In that way you will get a complete picture of your health status.
God bless.

Hi,
I am only a patient of this disease for 35months.
Like our Lainy answered in another message for another member said.
some like to be open and discuss their cases here,seeking medical as well as emotional support;others prefer not to do so but just listening or comparing their cases to other members who have or had the similiar situation.
But if you would like more information ,you are welcome to ask questions and we will answer to the best that we know how.
Yes ,there are a lot of information;but one thing can help you HERE through this web site is asking questions specific to your needs.
Are yours intra or extra-hepatic cholangiocarcinoma?
When you were diagnosis(March of this year?) and what chemotherapy you are on?
do you have any specific questions about the scans or the stage of your disease?
did you also consult radiation oncologist to seek other options?
And where you have been treated?
47 years is too young to just concentrate on “cancer diet” as plan of treatment.
So, if when you are ready,we will too.
God bless.

Hi,
To be more specific for radiation intervention consultation:
1. I will ask for opinion about Radioembolization or RFA for intra- hepatic cholangiocarcinoma(CCA).
2.for extra-hepetic CCA,I will ask for IBRT,cyberknife.
It all depends on where the CCA is in or out of the liver.
good luck.
I will also ask the pain doctor for morphine oral solution for break through pain.
I will also start to prepare things just in case.

God bless.

Hi,
it is common to replace the stents whenever they are clogged;mostly every 2 months or so; some can be longer depends on the patient’s status.
As long as the bile flows thru the stents into the intestine or outside into the external bag;that is ok.
Stents replacement is a relatively safe procedure.
God bless.