pcl1029
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Hi,
New cases of cholangio CCA in South Korea is about 3,500 cases per year according to the stats from the National Health dept.of S . Korea.
If you can prove that your husband’s CCA was caused by the eggs or even better by the worms ( the tissue slides from surgery or biopsy);then you will have a strong case; otherwise the chance is not in your favor to get VA help.
God bless.Hi,
I know how you feel. Your world is upside down,you have no one to turn to for a cure or even begging for a few years more.you feel you try your best but the efforts is in vain.you are mad as you could be. If so you are quite typical of a caregiver responses.
I have the intrahepatic cholangio CCA like your father for 34 months now,I had a 8x5x6 liver tumor also but no metastasis. I had 3 resections and is currently on chemotherapy. In short CCA is a long and winding journey that require patient,knowledge and planning ahead to navigate on it. I do not put any blame to anyone an myself ,I look at what happened to me is out of my power and ability, I only can try my best from this point on to provide the best of I know how as an example to those who are patients and care givers that there is always hope and comfort to those who seek it. I ,as several studies also found praying is good to relieve the anxiety and provide inner-self calmness for me to manage my disease and daily affairs. Good luck in your research.
Being said so, below are a few current recommendation in the States for treating CCA.
since I am not a doctor and only a patient and do not have the details of your CCA image scan record; I cannot provide more specific help to you at this point.
But in general, for intrahepatic CCA,that is the cancer is originated in the bile ducts of the liver ;if there are metastasis like lymph nodes involvement out side the liver, chemotherapy and molecularly targeted agents are the choice of SYSTEMIC treatment.
2nd opinion from a liver specialist, an interventional radiologist and medical oncologist from the best medical institution is recommended. surgery radiation and oncology are the triangle of treatment planning for cancer especially this one.Chemoembolization and radioembolization may be also considered if the tumor is too large and multiple, but the tumor burden should be within limits of the protocol (ie.<50%). Portal vein involvement is not an absolute contraindication for radioembo.BTW,This are palliative treatments and may provide disease progression free time for 1-2 years and hopefully newer powerful drugs with less side effects will come out to provide long term treatment and make this disease like a chronic disease( ie,like high blood pressure). Please read other radioembolization messages under the forum discussion of Radiation etc.
If the tumor or tumors are small(ie: God bless.
Hi,
Below are the risk factors for CC;in the United States and Europe, the main risk factors are PSC and choledochal cysts;and the incidence of cholangiocarcinoma is slightly higher in men.1.General risk factors
Age>65years(age 30-50 if patient with PSC-primary sclerosing cholangitis)
Smoking?(?=questionable)
Obesity
Diabetes
Hyperlipidemia?
2.Post surgical
Biliary-enteric anastomosis.
3.Chronic inflammatory disease
Primary sclerosing cholangitis with or without ulcerative colitis(30%)
Biliary tract stone disease
Hepatitis B(south east Asia)
Hepatitis C
HIV
Liver cirrhosis
Hepatolithiasis(highest in Taiwan,50-70% CC patient associated with this Dx.)
Liver flukes (highest in Thailand)
4.Drugs,toxins or chemicals
Alcohol?
Thorotrast
Dioxin
Vinyl chloride
Nitrosamines
Asbestos
Oral contraceptive (esp.the first generation of oral contraceptive pills)
Isoniazid
Phenytoin?
5.Congenital/Genetic disorder
Choledochal cysts
Caroli’s disease
Congenital hepatic fibrosis
Lynch syndrome
Multiple billary papillomatosis.References
1.CC controversies and challenges -Tushar Patel vol.8 ,April 2011 Gast.&Hep.
2.Evidence-Based ….Review of CC.-Murad Aljiffry etc. ISSN1072-7515/09
3.Epidemiology;pathogenesis & classification of CC-uptodate.com 19.2:May2011Adding to the above, If people love seafood or sushi,that is also may be a risk factors but that is my own observation only. And is not proven ,however people who are heavy in weight is a risk factor which I agree.God bless.
Hi, Jose,
First, your sister is only 49 years old therefore the age risk factor (<65) is on her side; that means she will have a much better chance to tolerate the chemo agents and the side effects of the chemotherapy treatment that comes with it.BTW,can you tell us what chemo she is on now?Palliative care is not a death sentence;it is just a medical term referring to the stages of a treatment plan. Even if your sister is in this stage of the treatment plan, chemotherapy may provide shrinkage of the tumor and the lymph nodes may even disappear and the whole situation will be changed if the chemotherapy is effective.
since I am not a doctor and only a patient like your sister and do not have the details of your sister CCA image scan record; I cannot provide more specific help to you at this point.
But in general, for intrahepatic CCA,that is the cancer is originated in the bile ducts of the liver ;if there are metastasis like lymph nodes involvement out side the liver, chemotherapy and molecularly targeted agents are the choice of systemic treatment.But I know in the States, resection of the liver along with the removal of the affected lymph nodes can be performed also if it is not contraindicated to the outcome of the treatment.
2nd opinion from a liver specialist, an interventional radiologist and medical oncologist from the best medical institution(usually a hospital affiliated with the best university) is highly desirable for your sister.Chemoembolization and radioembolization may be also considered if the tumor is too large but the tumor burden is within limits of the protocol.
If the tumor or tumors are small(ie: Yes, there is always hope in treating this cancer and I think positive thinking is one of the most important ingredients in fighting this cancer.
Praying has been proven useful in studies and will provide the inner peace that help both of the patient and the caregiver like you and will give you the mind set and calmness to prepare for this long and winging journey of this disease.
God bless.Hi, Lisa,
Your mom is very lucky that can have surgery to remove the tumor and the lymph nodes ; this is the best news that your mom can have if she was diagnosed with this disease.
Even with positive margin like you had indicated in your message, with the chemotherapy and/or radiation treatment; and with a positive attitude to fight this cancer; your mom will do fine in this long and winding journey of treatment.
I am a CCA patient for 34 months now,I regard my CCA as a CHRONIC DISEASE rather than as cancer; In this way,you,as a caregiver and the patient will have a more positive attitude and a better and informed mind set to prepare what this long journey will bring.
I find prayer is very helpful especially when choices are need to be made;especially when you feel there is no place or no body to turn to; and most importantly,prayer helps a person to quiet the inner-self and provide calmness and reduce the stress to the bodyand in that way it will help you and your mother. Keep praying.
God bless.Hi,
The chance that can have surgery is better than to win a lotto for the CCA patients like me who is in the 34months of fighting the intrahepatic cholangiocarcinoma journey. No matter what they find out,your mom will have the complete picture of the disease state of the cancer to help in the journey of fighting this cancer.
It is also a good idea to have a 2nd opinion from MD ANDERSON since you are so close to the #1 ranking oncology medical institution in the world.
Other caring people will join in to support you emotionally and provide information you will be needed at this time of uncertainty.
God bless.Hi, Kris,
I will definitely make the reservation for you. Paris is beautiful and the prayer that I made from The Norte Dame Cathedral three years ago do come true.
It is indeed a very beautiful and friendly place.For everyone on this board, keep up your faith and be strong, try your best to fight against this horrible enemy and in return,no matter what decision we have made, we will have peace,love and the certainty of NO regret.
God bless.Hi,
Make ginger juice by chopping the ginger root into two teaspoonful of little pieces,then use a food processing squeezer ( a very common kitchen item ) and squeeze out the juice and try one teaspoonful 3 times daily for nausea. it works for controlling nausea pretty well.You can use the capsule too but the juice is much faster than the capsule. Pray to Him and I will do the same too.
God bless.Hi, Jtoro,
I am sure you should take the patch,put it over on the upper arm and change it every 3days. Take the dilaudid as needed when you feel the pain is coming, not when you had the pain already. It takes about half hour to get the maximum relief of the pain. If you are not allergic to morphine ,you can ask for morphine SOLUTION by mouth for break thru pain . It is formulated as an oral solution so it will absorbed faster for faster relief of your pain. There is also sublingual Fentanyl firm you can put over the tongue too for the same purpose but is a lot stronger and I don’t think at this point you will need it.
For the nausea ,I am sure the doctor has given you something for that purpose,if you feel it is not enough, ask the doctor to switch to something stronger.
I will pray for you.
May the Love of our Lord,Jesus Christ, the Grace of God, and the Fellowship of the Holy Spirit be with you always.God bless.
Hi, lud,
Thanks for your day one experience.
4% only for leakage to the lung is very good news,that means much less side effects to your lungs with the procedures.
As I mentioned to other members, which I learned from one of my many interventional radiologist , she said the more the vasculariry of the liver tumor, the better result for the procedure. And as you may know, once they inject the y90 to your liver ,it will go through the entire liver,( unless they perform the radioembolization by closing off the liver segments which your 5 tumors are not located. ) Otherwise the procedure will take care of the Other little ones which too small to show up on the scan now.
Even they said y90 is a palliative treatment. If successful,it can buy at least a couple good years of not having chemotherapy. And if it comes back again in the liver, RFA ,CHEMOEMBOLIZATION AND RADIOEMBOLIZATION can be still used effectively until the magic bullet will be on the market and each of us will be forever CURE. If so, I will ask this board to organize a party under the Eiffel tower to celebrate for all of us ,or you can recommend a nice restaurant .
Gook luck on your 2nd day of treatment and if you are married, after the procedure,sleep on the RIGHT side of your parter for a couple days ,that means your liver, when you sleep on your back, should not faced toward you partner just for precaution .keep in touch,your info will help a lot of us.
God blessHi, Rachel,
I am profoundly sorry for the situation you are in now,no words can be expressed the feeling and love that a loving mother towards her son in such distress and prognosis. Nothing in this world can replace your love for your son and therefore that is NOT your mistake not to take your son to the cancer center for treatment.
This cancer is very difficult to be detected at the early stage,no symptoms at all until it is in the advance stage for most of the patients. The lucky few who can survive for quite while are far and few and most of us still require closely monitoring. So please don’t blame yourself for your son’s misfortune .
I sincerely hope for better outcome for you and your family.
God bless.Hi,
A very good scan report indeed.
Take a vacation as you suggested,enjoy to the fullness .
God bless.Hi, Fatema,
Thanks for your reply.
One thing good about that is if your mom did have a higher vascularity of the liver,that may mean the radioembolization your mom have will be more effective and will have a higher successful rate than the norm. That is good news.
Good luck and take good care of yourself, say hi to your devoted sister for me too,your mom is very lucky to have not one but TWO loving daughters taking care of her; she would be so proud of herself too.
God bless.Hi,
Jim, thanks to keep an eye on this and follow up to ask the radiologist and keep us informed.Fetema , dose it mean your mom may actually has HCC-CCA ?
Or carcinoid of the GI as the primary tumor? Wow I am confused too. I thought CCA Mostly is diagnosed from pathology tissue stains and I think your mom had it all done?
What is the reason that lead to their suspecting of may be neurondocrine tumor as the primary tumor now? Because of new symptoms or the back pain your mom had before.
The difference between your mom and the group of the patient is that, you mom has you to find the best treatment plan for her and it will make a big difference for your mom.Tell your mom she is very lucky to have a daughter like you to care for her.
Good luck and
God bless.
