Cholangiocarcinoma

The Cancer Assassin said:

CC survivor/thriver age 39
Hello there,
I was diagnosed out of the blue with stage IV, inoperable, incurable, cholangiocarcinoma on March 24, 2010. All statistics said I would be dead now. Im obviously not

I get chemotherapy now every other week and my cocktail is Gemzar/Cisplatin which has been studied to be the best combination of drugs to fight cholangiocarcinoma by the New England Journal of Medicine (study was concluded about a year ago). I also get a nutritional IV from a naturopath once a week. However, now the bank account is very low and I cannot afford to go that often to the naturopath as insurance does not cover it. I can honestly tell you that the naturopath is vitally important to me because it counters all the negative effects of the chemo, well not all of them but I fell incredibly better when I get the IV' than when I don't (the IV's have vitamins, minerals and glutathione in them) I also take many supplements (you can find the list on my blog at thecancerassassin.blogspot.com if you are interested). My blog tells my whole story and also has a ton of links to resources I have been collecting in the past year. My facebook page at The Cancer Assassin also has a ton of resources to share (more so than the blog at this point).

I too have an extremely hard time eating or even being hungry, I would recommend edible marijuana products for that. They really help with the pain of liver cancer (mine is often extreme) and they really help me to have an appetite and to want to eat. Eating is absolutely vital when you have cancer. Your body cannot fight if it is malnourished and most cancer patients actually die from malnourishment than from their cancer, so you can imagine how important it is to get her to eat. Avoid sugars (sugar feeds cancer) and dairy. For me dairy completely makes everything worse. My bile duct goes crazy and I wake up vomiting and with immense liver pain and very phlegmy and congested and coughing up nasties. all from dairy. There is a great cook book called The Cancer Fighting Kitchen that contains a bunch of recipes and even sorts them by symptom (nausea, fatigue, chemo week/day, after chemo, what to eat if you have no appetite, etc) and it is priceless to me.

Whenever you can, cook for her and make her food. Often I do not want to eat cause I feel so crappy and fatigued but if someone were to put food in front of me (make sure it is healthy and not full of chemicals, whole organic food) I would most likely eat at least some of it. Often on days when I have little energy and little appetite I will make a smoothie out of strawberries, blueberries, pineapple, yogurt, protein powder (I use diaryless whey and it tastes very good) coconut water (natures own gatorade and oh so good for you), almond mild (my milk substitute, no soy!) and whatever else sounds good. It is like a meal in a mug, so I know I get all my vital nutrients even though I don't feel like eating.

I could tell you so much, but I don't want to ramble....Please let me know if I can help in any way.
Many many healing vibes and prayers to your mother. And you are right! most doctors aren't extremely helpful mostly because they cannot recommend something that is not "scientifically proven" like the naturopath and pretty much anything "natural" at all. They usually stick to what they know and that is synthetic drugs.

I hope this helps.

Laura

cathyhd said:

Can we talk?
I have Colangeocarcinoma. It was resected. I had preventative chemo (gemcidabine/cysplatin) for several months. My CTs showed clear until last week. Now, it shows an enlarged lymph node in my stomach and the PET confirms a malignancy is likely (though my tumer markers are fine).

We are preparing for the next step. I'd love to talk to you since you had some success. I hope this finds you well!

My cell is 214 734-5023 and I'm really wanting to make the best choice since this is so chemo and radiation resistent!!

DiannesDaughter said:

My mom has cholangiocarcinoma. She was just diagnosed Dec 2011. We are hopefully going to cancer treatment centers of america in zion, illinois within the next two weeks. They are just making sure our insurance covers everything. My mom is only 56.... very quiet and to herself. SOOOO DEPRESSED. I am trying to find someone who has gone through this rare nasty cancer who might be interested in talking with her? Also, families and caregivers that can help give some insight to myself, my dad and my aunt who will be traveling there with her and we serve as her home caregivers while she is at home. (We live in Lincoln, Nebraska).

Would you be interested in emailing our stories? I have found that it is very hard to get ahold of someone going through this or a survivor or their family etc. Does anyone have any resources for this type of thing?

If you are interested, please email me jparker21988@gmail.com it goes right to my phone and I will respond immediately.


I am in serious need of some support! I know we all are.

- Jess Parker, age 24

Jersey Girl said:

Hi all!
My mom, age 78 was diagnosed with Cholangiocarcimona in March, 2011. Her liver lesion was discovered by a fluke. She had fallen a few months back and was having persistent pain in her right side. Her doctors did x-rays which were negative and finally an ultrasound thinking it was her gallbladder. The first ultrasound was clear except for a chronic gallstone, however a repeat showed a liver lesion. From there she had a biopsy which was negative/inconclusive. I still had my suspicions so I had her ask her doctor for a repeat ultrasound. The liver lesion had grown! Her doctor wanted her to have a repeat biopsy, but I felt we were just wasting time. I went to the web site for Memorial Sloan Kettering Cancer Center in New York and obtained the number to speak with a case manager. From the nurse case manager we were referred to a MSKCC surgeon. Up to this point we thought it was Cancer of the Liver, but were baffled by the negative biopsy. The MSKCC surgeon knew right away what is was. In April, 2011 she had a Right Liver Resection. (Bile Ducts run thought the Liver). She had multiple post operative complications and now almost 4 months later, she is finally feeling well. Now we are faced with consultations with medical oncology for chemo and radiation and it has been frustrating. There has not been adequate research and clinical trials for adjuvant therapy following surgical resections for this type of cancer. We are told there are three post op courses one could take: Observation, (just follow up CT Scans), or Chemotherapy and Radiation or just Radiation. The statistics for survival/reoccurence appear to be almost similar no matter what avenue you pursue. My mom does not want to put herself through Chemotherapy or Radiation knowing the treatments may not prevent a reoccurence. Quality of Life is important to her as she always been a very active person. I found a physician at Mount Sinai in New York who specializes in pathology and Cholangiocarcinoma and we are going to get another opinion. Up to now what she have been told is that 5 year survival with just the Observation avenue is 36% and with Chemo and Radiation 40%. Not much of a difference after putting yourself through all of the side effects of Chemo and Radiation which takes months just to recover from them. The Memorial Sloan Kettering staff and surgeon was wonderful in my mother's surgical care and final diagnosis. She will continue to follow up with the surgeon periodically, and he is very supportive of the path my mother will choose for continued treatment, if any. I hope this info helps someone and their loved one.

nkl2012 said:

cholangiocarcinoma
hello ishita.
first of all i request you to have will power and patience. I am also writing from India and based upon my past experience of a similar kind i would like to give you some information which i am sure will defifintely help you to clear your doubts . I lost my mother a month back she was also suffering from cholangiocarcinoma which was diagnosed in july 2010.Her cholangiocarcinoma spread to liver which resulted in her untimely demise.
1. In this disease there is obstruction in bile duct due to tumour which prevents the flow of bile from liver to intestine. The bile starts building up in liver and results in itchig, yellow discolouration of skin, yellow ness of eyes and is called jaundice.

2.Since your father was diagnosed with jaundice around three months back, you have not mentioned did doctor placed stnets in his bile duct to relieve him from jaundice. Placement of stents is usually the first step so as to relieve the patient from jaundice symptoms.

3. After placement of stents doctor decides whether surgery could be performed or not. if surgery can be performed chances are good . however in majority of cases the cancer is diagnosed only when it is in advanced stage and chances of surgery are almost nil.From my experience i would like to add one more thing that the placement of stents should be done by highly experienced gastroenterologist only otherwise there are chances of infection called cholangitis which is very difficult to manage.

4. I cannot comment on the chemotherapy / radiotherapy pros cons bcause my mother refused to go for it becaue of the side effects asociated with it. I can definitely give you some information regarding the hospital from which my mother got treatment a s well as some alternative therapies which can be useful in improving th life span.

5. we had a bitter experience of treatment in some hospitals of Punjab where infection developed after insertion of stents as mentioned by me.We therefore decided to take my mother to Medanta ,Medicity, Gurgaon in the gastroenterology Department where previous stents were removed and metal stents were inserted through a process called PTBD after which my mother was relieved completely of jaundice and infection in a few days. Although treatment is costly in this hospital but trustworthy and fruitful. I therefore suggest you to consult once at this hospital to know the exact stage and treatment options.
6. After my mother was discharged we decided to put her on alternative therapy. We started the medicine of Divya yoga Trust which included of aloevera juice , herbs , gomutra, tulsiras .After using all these medicines my mother regained her lost health in a months time . I dont mean that the tumour had gone but its growth was definitely arrested by use of these medicines . My mother remained fine for around 10-12 months but after that we came to know that tumour had advanced to liver which was an indication of advanced state and ultimately we had to prepare ourselves for this loss.After my mothers loss i decided to associate myself with some forum because if somebody is helped from my experience i shall feel highly satisfied and this is the reason why i am posting on this site .i also request you to stop sugarfree tablets if your father is using such tablets because these are also associated with tumours and are not safe at all. At last i can only say that there are certain things beyond our control but inspite of it our duty is to put in the best of our efforts and therfore i request you to have will power and take as much care of your father as you can . I am sending you a mail of the same post so that if you have any kind of query in your mind you can revert back to me. ok gud bye

Er Neeraj
India