darla

Hi Kathy,

Welcome, you have come to the right place for answers. I am so sorry to hear that you & your family are dealing with this terrible cancer. You are correct, everyone is different when it comes to this disease. In my case my husband was healthy the beginning of July & about the middle of the month started having problems. The doctors treated a kidney blockage with a stint. It progress quickly from there. Several visits to the ER. 4 hospital admissions. He was at stage IV when finally diagnosis with CC after a liver biopsy & a PET Scan. He passed away 9//2/08 at the age of 62. In his case it went very quickly, many here have fought it longer & have had more optimistic results with different types of treatment. In our case it progressed very fast & he quickly lost so much weight & was so weak & sick that any treatment options discussed were not considered because of his condition. Atleast I have the consolation that he is no longer suffering or in pain. I now have to go on & pick up the pieces. All I have left are the memories of all the good times we had. In any case, all I can say is that you will all need to be strong for your Mom. The most important thing is that she be kept comfortable & free of pain. Good Luck to all of you on this journey. Please keep us posted as to how your Mom is doing. If you have any specific questions you need answered feel free to ask. I or anyone else here will be glad to try to help you every step of the way. I wish I had found this site sooner, but even though my husband has passed on, it has been a blessing & comfort to me to have found it. I can hopefully help others that are now dealing with this terrible cancer. God Bless You & your family. My thoughts & prayers are with you.

Darla

Lainy,

Sorry to hear about your friend in Waukesha. I also would like to extend my condolences to the family. This terrible cancer is just taking away too many good people way too soon. It is so sad.

Darla

First off, Good Luck to you Jeff. Lainy, it is interesting that you mention the ureter stint & bag. That is how Jim started out before we knew of the cancer. He had a stent put in the ureter & later had to have a bag as it was failing. That was in July & they thought it was caused by scar tissue. I now believe it was from the tumors. He too talked of getting rid of the kidney. I wish I had know then what I know now, although in Jim’s case I do feel it would not have made much of a difference as the cancer was already too advanced. Even though it went so quickly in only 7 weeks, I have to console myself that he no longer is suffering or in pain. I pray for all of you that are still carrying on & wish you all the best. It is so frustrating that all the information we are gaining here is really not out there for others. Atleast it would help them to understand what is happening to them. Unfortunately by the time they find this wonderful site in a lot of cases, like ours, it is too late. Atleast I now have somewhere to go for support from others that have been there or are now dealing with this terrible disease & truly understand. All I can do now is try to be their for others that seek out this site for answers & support. Good luck to you & Teddy also. I will be thinking of all of you & you are all in my prayers.

Darla

I also am interested in the possiblity of a genetic link. My husband passed away 9-2-08 of this terrible disease after only 7 weeks. Our sons questioned the possiblity & the doctors for the most part seem to feel there is no genetic connection. However none of their answer were a firm NO. We feel there could be a link & would be interested in anything anyone can come up with on this subject.

Thanks,
Darla

Hi Vickey,

I am glad your husband is responding to treatment. I am hearing more & more of the relationship to the liver flukes in VietNam & other Asian countries. For those of us that have dealt with & are still dealing with CC it is already too late, but if enough of us keep getting the word out maybe we can help others. As for the genetic issue, I have been told that it is “more than likely” not the case, however, my sons & I have been questioning that also. Vickey, good luck to you & your husband. Please keep us updated as to his progress.

Darla

Sherri,

I posted this on another discussion board. Don’t know if you saw it or not. This is what I was told by a 2nd year med student as to what to expect. I wish I had know all of this before my husband passed away as it would have helped to understand what was going on. Everything she says here is exactly what happened with him. It may help you.

>> cholangiocarcinoma is a cancer of the bile ducts- vessels that drain
>> bile into and out of the liver. it is a weird tumor in that it is
>> very silent until it is large enough to impede on other organs around
>> it (ie. liver, gallbladder, pancrease, etc). by the time it
>> manifests itself in symptoms such as turning yellow, abdominal pain,
>> itching, vomting, nausea, and things like that, it is often spread to
>> a point where it is not able to be resectable by sugery, which is the
>> only definitive cure. thus, a lot of the management is by palliative
>> measures and pain management because of the late diagnosis.
>>
>> there is a higher prevalence in asia due to some kind of endemic
>> chronic infection associated with liver flukes. other risks factors
>> include chronic hepatitis, HIV and ulcerative colitis (a form of IBS).
>> it is hard to pinpoint any one of these down because many people with
>> the above don’t develop the cancer. the fact that he had a parasitic
>> infection may have contributed to the development of the cancer, but i
>> would not say that it is the sole cause. the majority of people
>> diagnosed with cholangiocarcinoma have no known risk factors.
>>
>> as a family, i would make sure he is in sufficient pain control- if
>> this means very high doses of pain meds, that is ok. if he is still
>> lucid, he will eventually want to stop eating and stop drinking
>> fluids- this is alarming because it is against our thoughts that food
>> = comfort but this is normal and very characteristic of the final
>> stages of death. hydrate the mouth with small ice chips if he cannot
>> drink fluids. in the last days, he may spike a fever. this is also
>> normal. there may be secretions in the mouth that towards the end
>> will accumulate because the swallowing reflex is diminished and this
>> will make a rattling noise. these secretions can be sucked out of the
>> mouth if necessary.
>>
>> i know this is all hard to hear but i wanted to write it out in case
>> the doctors didn’t say anything about what to expect.

Try to be strong & hang in there. My husband was a strong health 62 year old man 7 weeks before he passed away on 9/2/08. In his case it went fast. For him that was a blessing. For the rest of us it will be a long road ahead. I loved him & I miss him terribly. Every case is different. Good luck to you & your Step Dad. My thoughts & prayers are with you & your family.

Darla