pcl1029
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Hi,
Please check the 2 emails I sent you.
After the procedure,if your husband can be discharged,ask for Rx for antibiotics for infection that may follow .
God bless.Hi,
Mayo told me that my cancer,which completely resected the second time,will most likely to come back after adjuvant chemotherapy when I made that consultation to learn more about my cancer. I am still on the adjuvant chemotherapy . As you may know,the recurrence rate of this cancer is very high(50-75%) ,but it does not mean that we should not keep on trying our best to fight against this cancer; buying time as long as we can by using current available medical treatment methods– chemotherapy agent,targeted agents and radiation treatments ; and hoping the new drugs can be here in time for us.In my opinion, Mayo Clinic is very conservative but truthful in their assessment .
So, as they said, try the chemotherapy tomorrow,take it one day at a time .
Try to get an opinion on radioembolization for your husband to see whether he qualify or not if there are no mets to other parts of the body except the liver.Be strong and knowledgable in fighting against this cancer; be hopeful and practical in dealing with this disease knowing that you have try your best for your husband and there will be no regret when the time has come.
This is my way of looking at this disease and only God’s grace will say otherwise.
God bless.Hi,gavin,
It is a lot of work to revise this threat,by I think it worth the time spent.
When I was new at this site,it was so confused as to where to find the info that was related to my type of cancer and the general knowledge of it.
i hope the new members will have a better experience.
as always,please say hi to your mum for me.
God bless.Hi,
Mass General and MD Anderson will automatically do biomarkers tests for patients who have cancer as far as I know in most cases.
According to the ASCO statement not long ago, they do not recommend biomarkers test as a way of determining the choice of drugs for personalized treatment plans at this point; but i did the tumor DNA analysis biomarkers test when I had my second resection before the ASCO recommendation to see just what it is and what is in it; and how useful and what are the infomation or resources they used to make such recommendation for selection of the chemotherapy treatment.In short, I am not satisfy with the process.and my oncologist did not use the result to the fullest to treat my cancer.
But if you are interested, I use the” Caris Life Science” for the service,you can google their web site to learn more. It cost about 10,000. dollars.
God bless.
Hi,
Phototherapy(PDT) is used for treating extrahepatic bile duct cancer(cancer in the common bile duct and/or left and right hepatic bile ducts that goes to the liver) and PDT is not for intrahepatic liver (cancer in the liver).
Howerer IMRT(cyberknife) is also for extrahepatic CCA.
Gavin knows more about PDT and he will be in touch of you shortly.
But please make sure yours is extrahepatic CCA.
God bless.Hi,
yes, nonalcoholic and nonsmoker can have this disease too. I am one of them;
but it is not common.
My risk factor is I am a chronic hepatitis B carrier since birth.like most the patients in the Far East region.
My sister-in-law died of the same disease because of obesity.( it is a very common problem occurring in the States now especially the young teen age group and the middle age group ).
Alcohol and smoking is the risk factors among others for this disease; but in Asia,especially the Far East like from Thialand to Japan , the entire coastal region,liver and cholangiocarcinoma(a form of live cancer in the past) are common;so is India and midddle east like Egypt and Iran and Israel.The liver is the one of the large organ( SKIN is the largest organ in human beings);anything goes thru the liver for processing(ie: medications and the food and drink we consumed)each has the possibility to affect the liver and cause problems.alcohol is being one of the “drug” that affected the liver the most.I think one or two drinks a week is ok,but long term excessive use will cause liver cirrhosis.
i hope the info helps
God bless.Hi,
Most of the time when a patient stayed in the hospital for too long a period of time;and if he or she stays in bed all day long without moving around; deep vein thrombosis(DVT)–that in blood clot in the femoral vein in the legs will develop and resulted in pain. If untreated,the blood clots can travel through the veins and into the lungs and develop the condition known as pulmonary embolism(PE).It is a very serious medical condition that required immediate hospitalization. Heparin infuision,low molecular weight heparin like Lovenox or Arixtra can be started and followed by Coumadin a few day later.
Personal health status, medications included chemo agents and spending long hours in flights or ground transportation without moving around frequently(ie; every 2 hours or so) will increase the chance of DVT.
God bless.Hi,
Are you still on Xeloda? it’s side effects included diarrhea,headache ,dizziness and infection(due to low WBC or neutropenia). But most likely the infection was related to the stents.
Make sure you drink lot of water to hydrate yourself enough to prevent kidney problems;Cisplatin is the chemo agent that is toxic to the kidney.
What is the name of the medication that is/are in your clinical trial?
Can you name them so I can take a look for you?
As long as your fever went away,that is a good sign.
God bless.Hi,
May I ask do you have the result of the AFP and CEA and what are the values?
CA 19-9 is not an absolute indicator or 100% useful biomaker for cholangiocarcinoma. I had told you before I. Had 14 months of gemcitabine after my first resection and I did cat scans every 3 months for check up after I stopped the Gemzar. 6 month later, the CCA returned. During the 20 months after the first resection,I had CEA and CA19-9 done every month and the CA19-9 never exceed 27 ( well below the value of 37). I believe CA19-9 is of limited value in predicting the return of CCA in ” intrahepatic cholangiocarcinoma” as compare to extrahepatic cholangiocarcinoma.
God bless.Hi,
If I may, I will suggest you to get a radiation oncology consult in addition to the medical oncology consult if the tumor is only confined in the liver.If it had metastasized to other parts of the body(aside from those lymph nodes just resected), then it will be a different story. Positive margin in liver resection are not uncommon and systemic chemotherapy is the general approach. But lately radioembolization can be considered if the tumors are confined in the liver. The procedure seems to be easier on the patient with regard to the duration of treatment and side effects.
A few of our members are on that procedure now and you can read about their messages under the experience forum ” Radiation treatment and option” on this site.
God bless.Hi,
If your mom is still on Flagyl and Cipro,you may take them with food or after meals to minimize the side effects of nausea ,dizziness,vomiting and headache.
both drug can cause the above common side effects.1. The truth is the nausea from the medications will get betteronce your mom finished the course of antibiotics treatment.
but if your mom will be on chemotherapy then it will be a completely different story. Nausea and vomiting are the most common side effects of MOST if not all the chemo agents; even to the mildest one like Xeloda or gemcitabine or some targeted therapy agent. The metastasis to the stomach may be also a factor too but I am only a patient and not a doctor,and that is just my guess.
2. The truth is that I saw my-sister-in-law (58 years old ),who had extrahepatic CCA and I can use that example to answer your question; it took just 6months from a still vibrant woman,with no sign of sicknes, who had under chemotherapy for about 9month,took us to dinner and enjoyed our visit together,talking about the good old days about sisterhood etc.with no signs of deterioration to the time she saw God. she only had mets to the omentum at diagnosis and later (within the last 2 months)in the ovaries. I try to answer to your mom’s case more specifically;but I think this will be the best way to do so.
3. Based on your feeling about quality vs quantity of life , as follows.—
–“The one thing I keep hearing is to encourage her to choose quality of life over quantity. I hate it..I don’t want her to have to choose, she’s so young, happy and full of life with 6 young grandkids who adore her.”—
I will not advise you on this, but to others it may be of great value especially after the event of my sister-in-law’s case.
God bless.Hi,
Thanks for your compliment.
I am only a patient like you, Kris; we just help each other out when we have the chance.
As you mentioned the members,like you, and other moderators provide their experience and knowledge to each other ;to encourage each other;to support each other and in this way make this site unique and helpful.
Besides,I really think the persons we need to thank the most are Mark and his sister Stacey who had the VISION to establish The Cholangiocarcinma Foundation and SUPPORT to start this web site several years ago for us to share,to learn and to advance the cause of finding the cure. Without their vision and support , at the most, we will be just like other message boards as “the one man show” only and cannot join forces together to provide to our members the best of each member’s expertise and experience to help each other out.
And this is the difference and reason why I think our membership are growing.
So, i think you should thank yourself too because through your message,you increase the members’ awareness of the side effects of the medication.
God bless.
