pcl1029

Hi, Lainy,
How’s your vacation in Vegas? Bringing a lot of gold back to the dusty Phoenix AZ?Hope you had a good time.
I am really happy that you are back.
Please ,if you can look at Bunksy,the new member’s question about Hospice care.
and try to give him/her a few tip on hospice care.I do not know that much about hospice but you do.You are the most dominant force for patient advocate on hospice and I think this new member can learn a lot from you.
God bless.

Hi,Ike,
First of all, I am only a patient,I am not a doctor,and the suggestion I will make to you is just your information only, you must confer with your doctors first before adopt of any of the suggestions.
1.If you do not have any CAT SCAN or MRI with contrast for your chest,abdomen and pelvis you should have one before the removal of the gallbladder and repair the stricture of the common bile duct.This will provide the doctor(surgeon) a better idea of your cholangiocarcinoma(CC) and assessment for vascular invasion for your hepatobiliary system . I know doctors can take out the gallbladder and stones with or without open resection.But won’t it make you feel better if you know other parts of your biliary systems is in good shape too ?
2. If surgery is needed as you may suggested,2nd surgical opinion by MD who specialized in biliary,pancreas and liver is highly recommended .Where do you live ?
3.You are very lucky if this is your only biliary problem,you discover your problem much early than most of us.
God luck and God bless.

Hi,
For information about treating nausea/vomiting please read the “side effects” forum on this web site;I just updated the info. yesterday.
As far as I am concerned ,the information are pretty current and up-to-date in the States. It also provide alternative if you do not want dexamethsone in preventing N/V.But again, you have to discuss with your oncologist because you do not want to offend him/her in taking care of you;Plus they have experiences in using them too.
God bless.

Hi,Please forgive me for my honest discussion with you.
I took the 14 month of Gemzar as Adjuvant chemo therapy(8 month more than that the standard treatment after I talked to the Eli Liiy professional services and their position with regard to Gemzar is “until disease progress or unacceptable side effects occur).
I had the 5cmx8cm removed and had a clear margin of 1.5cm,so general 6month of adjuvent Gemzar will be enough.
I did have my cc recurrence 2 weeks ago and under a 2nd resection. and I will discuss the tretment options with my doctotrs a couple weeks later.(chemo or no chemo,RFA and /or chemoembo or just do nothing in the future etc.)
Adjuvant chemo like your father has is to provide a better chance to prevent the CC from coming back.It does not guarantee that it will provide the CURE.
The best thing you can do is to monitor your father EVERY 3Month with MRI with contrast or PET/CT scan so just in case when the cc comes back you will have more optional treatments.Treating CC as a CHRONIC disease like hypertension will make you and your father feel much better emotionally and will provide you more positive energy to deal with this CC disease.
God bless

Hi,Trevor
I am very sorry not to reply sooner;I did not check my email until now.
As you might already know;I am an ICC patient just had my 2nd liver resection done 2 weeks ago.My first one was about 2 years ago in June.BTW I am 60 years old ,I am a medical professional working in the hospital setting and I also communicate with my sister-in-law who has ECC via emails to help her about questions of her chemo treatment.She has stage IV ECC spreaded to her omentum ;and she got good results when she was on Gemzar+Xeloda and Avastin.Her carcinomatosis on the omentum shrinked “significantly” after only 8 weeks of treatment and that is why I suggested to you to see whether your oncologist will try it for you. It is much easier to take with regard to side effects of nausea and vomiting.However ,she is one of the few patients that developed the “Black Box” warning side effect of perforated colon contributed to Avastin because of her history of diverticulitis and had to stopped.she recovered and now she is on Gemzar+Xeloda.
If you noticed,I did ask you” are you on TPN in the hospital? ” the reason behind that is I want to know whether your intestine is fully normal and functional ,so that the Avastin can be used on you. GI abnormality may exclude you from the regimen that I suggested to you. Please consult with your Mayo clinic oncologist.

You are only 24 years old,you have the age factor on your side to fight this CC.

You ask how I deal with my CC.All I can say is CC is a long and winding road,it requires courage,patience and up-to-date knowledge to navigate on it. I am also a Christian and I pray and read the bible daily.And praying activities has been proven in randomized studies that benefit cancer patients.(read CAM under alternative forum on this web site if you want to know more).I keep busy and I will go back to work in August . In short , live by the Grace of God and realize that keep on learning about this disease is important in searching for a more effective treatment and eventually a cure for you and others. Do not worry because we cannot predict our future no matter how hard we try. Through research during the last two years I know one thing for sure,that is if we can hang on for the next 5 years;I will not be surprised a couple more effective treatments for CC will be found and the cure will not be far away .

So, keep your fighting spirit high and keep learning about this CC disease to help yourself as well as others;keep busy and forget that you are a cancer patient;treat the CC as a CHRONIC illness and you will feel much better about yourself. That is what I am doing now. Emails me anytime and I will try my best to learn from you too.
God bless.

Hi, Please forgive me for my honest discussion below.
As always, this is for information purposes only,consult your doctor first is always a must.
I am sorry to hear the recent progress of your CC even after OTL on Dec.2009.
A CA19-9 of 9000 is indicative of unresectable CC in most cases.(sorry for my honest statement;but I am not a doctor,I am just a CC patient like you and like to read a lot about CC,so I could be wrong)
It is not uncommon for CC recurrence; the truth is that the recurrence rate is between 50-75% .But people can still live 5-10 years after that if they can find an effective treatment plan.
According to what I can understand so far,if the CC spread to the omentum, the clinical trial of Gemzar+Xeloda and Avastin may be a good alternative regimen if your oncologist think that may be of value to you .(it is listed under clinical trials on this web site.(The Rosewell Park Cancer Institite trial NTC0100755)
Because there is no cisplatin in the new regimen ,so you take away the chemo agent that is high up on the list (90%) to cause N/V. Please also check on the suggestion for nausea and vomiting on this web site under “side effect” forum for more info to control nausea and vomiting.
Zofran alone with Tigan suppository or Compazine suppository will not provide enough control for your nausea/vomiting symptoms if you still on the chemo.
Are you on TPN for your nutrition needs? and may I ask why?
Consult your medical oncologist and dietician now since you said you are still in
Mayo Clinics.
God bless.

Hi,Adamaria,
The choice is always up to the patient him/herself after careful consultation with medical professionals including doctors who specialized in treating CC and social worker or “case manager” who familiar with the patient._It is always a tough decision esp. when the patient has dementia .
There are currently no standardized treatment protocols for treating cholangiocarcinoma;and the outcome of each systemic therapy(chemo) is not certain;surgery as mentioned by Jim above only provide potential cure and is tough for anyone to go thru.(BTW,I had 2 resections done in the last two years,chemo for 14 months and was no picnic.)

“Survival statistics can sometimes be useful as a general guide, but they may not accurately represent any one person’s prognosis.A number of other factors,including other tumor characteristics,how the cancer was treated,and a person’s general health and age can also affect outlook.Your doctor is likely to be a good source as to whether these numbers may apply to you…..” from American Cancer society-bile duct cancer info.
2nd opinions are highly recommended .
God bless.