Bile Duct Cancer Year 2010

On May 27, 2010 5:02 PM Solutions wrote:

Patti, I thought the previous post was confusing, your's is more confusing.

If you want some input from the folks that have lived with this issue you should ask. Your comments are do not fit the norm. If you were diagnosed with bile duct cancer and given 3-11 to live...what did they do to allow you to go 2 years and 3month? I know bile duct cancer very well...and something is wrong with your message as well as the previous message.

Good luck and I hope you can return to this message board and tell us it's 3 years and 5 months.

Leonard from Alamo, California

 

Hi Leonard,

I know my situation sounds weird, but I have heard of a couple other people with similar experiences. At the cancer center I go to they have one other person with a similar experience. Definately NOT the expected path for bile duct cancer!

I was diagnosed with cancer of unknown origin first. During a CT scan for my lungs (I had a persistent cough) they found 4-5 tumors in my liver. They did a biopsy and came up with bile duct cancer. Clearly it was not blocking my bile duct as I had no symptoms of any kind.

I went through several chemos including gemcitibine, cisplatin, and others I can't think of right now. Since my tumors are inside my liver, that means it's intrahepatic, and not a good candidate for surgery. Having multiple tumors doesn't help. So anyway, later on they did another biopsy and sent it for some genetic testing and comparisons with other kinds of cancers. Meanwhile I was on oral chemos like Zeloda and lately Nexavar.

The test came back still unclear as to type of cancer, but the best match was liver cancer mixed with bile duct cancer. It's called cholangio-hepatic. No one really thinks I have liver cancer as I've never had hepatitis, my liver functions are great, no cirohsis (sp?) nothing to indicate any damage to my liver. So.... here we sit.

I've had CT scans every 3 months from neck to pelvis for 3 years now. Nothing grows (much), nothing shrinks, it just sits there in multiple tumors ocassionally causing me some pain but that's it.

Does that make things any clearer? Still the best guess is bile duct (mixed with some liver cancer cells) but clearly slow-growing.

I'm off all chemo right now, and will be for a second three month stretch until September when I have another CT scan.

With 2 biopsies now they are sure it is cancer, so no reason to go there (too bad!) it's just an oddly progressing type I guess. Someone else who chats on these boards has shared similar experience to mine, but I haven't heard from them for awhile.

It will be exactly three years on August 1st. :)

Patti

Hello Patti,

Well, very, very, very interesting. I can't respond yet. I am re-reading your message over again.

I will get back with you early Monday morning.

By the way, if don't mind me asking...which hospital are you are you being treated?

I have my doubts about bile duct cancer.

The dots are not linked very well.

You say a CTscan  have they suggest a CT/PETscan?

Talk to you later...in the meantime take...I'll be back

Your friend Leonard from Alamo California

On Jun 20, 2010 9:26 PM Solutions wrote:

Hello Patti,

Well, very, very, very interesting. I can't respond yet. I am re-reading your message over again.

I will get back with you early Monday morning.

By the way, if don't mind me asking...which hospital are you are you being treated?

I have my doubts about bile duct cancer.

The dots are not linked very well.

You say a CTscan  have they suggest a CT/PETscan?

Talk to you later...in the meantime take...I'll be back

Your friend Leonard from Alamo California

 

 

Hello again Leonard!

Ah California! I lived there for quite a few years. In fact I sent my records to a dr in LA and to one recommended to me in Pittsburgh. They both agreed with my (bile duct) diagnosis and treatment as long as it worked, then mentioned things like chemo-embolization, etc. So far my dr is more "why rock the boat?" I used to get so angry at that!!!  Nowdays I'm much more willing to leave it alone. :)

Anyway, I live in Tucson, AZ now and go to the ACC, Arizona Cancer Center which is part of the University of AZ.

It's quite well rated and respected, one of the few NIH ones (I forget the details at the moment) My oncologist is a specialist in GI cancers and pretty well known I guess.

Anyway, please give me any feedback that comes to you! As you say, "the dots are not linked very well". :)

I had two PET scans, neither of which showed much. Evidently there's something about the contrast that doesn't work well on me or something. It's been a while! And I do have bouts of "chemo brain"!!!

Your friend Patti from Tucson,  AZ

Hi Patti,

Call Dr Jenkins at the Lahey Clinic in Burlington Mass. Last year  I had a cough which I now think is a sign of CC/Bile Duct Cancer. March 09 I felt a bump on my side and did not realizes the trouble I am in. I had all the scans Etc.. Went to Mass General were they said the tumor was to large to resect. I was told Dr Jenkins "liver surgeon",was the best possibly in the country. He did not blink an eye and in 3 days removed a tumor the size of a basketball as described in the Post Op report. Problem was he also remove 1 from a lymph node, and several satilite tumors. I am considered to have Interhepetic CC/Bile Duct cancer. The Operation was a success. 3/4" of liver and gall bladder removed. The bummer was that the first Oncoligist I saw after the surgery, said it was highly to recur. So I did Gemcidibide&Oxsolyplatinum for 6 months preventitive. April 2010 anniversary scan, 24 plus tumors in my lung, biopsied for CC. June 2010 scan tumors have grown slightly, largest at 2.4CM. I realize that no chemo will kill these bastards so I am waiting on a few trials to shoot for a miricle. I have talked to alot of cancer places, and will continue. I do eat some crazy foods, but I not sold this will help. So my point is call Dr Jenkins and see if he can remove that thing, before it spreads!!! Leonard, you seem to be a fountain of information regarding CC, thanks for all you do to try and help others, please keep doing so!

Art

why are you asking about the travel to east asia and oacific?

Is thre any corelation of this kind of cancer to the area?

Hello ushamreddy,

Yes there is a corelation.

It's a parasite in their water and in their fresh fish. If you drink too much water and eat too much of their fresh water fish 9 out of 10 you will get the parasite. The next problem is within 12 to 15 years it will surface and most likely kill you.

If you are a subject to this issue...get blood work done especially the liver test and the the bilirubin...if your bilirubin is up and out of range you may have a problem.

If you are a Vet and you were in Southeast Asia...you may have a serious problem.

Fill me in on your travels and when and how long and if you drank a lot of their water or ate their freash water fish.

Bile duct caner is a real serious issue

Take Care...Leonard form Alamo California

On May 26, 2010 9:03 PM Harpreetsonia wrote:

Hi my name is sonia,

My brother is 33 and just got diagnosed with klatskin tumor. His tumor is 2cm by 1.5 cm in the right hepatic duct. There is a lymph node near the tumor. they are not too sure if its effected. He had ECRP and a stent in his liver to drain the bile. We are waiting for the laproscopy yet since last week. There has not been a biopsy done as the doctor could not reach the tumor.

Any one out there please advice me of the best ctreatment possible. I just read about the Mayo clinic. His tumor is spread towards his liver too.

Please help

Harpreet

Hello:

My husband has had PSC for 8 years - he is 53.  He has developed a 3 cm Klatskin tumor and is going through chemo/radiation at Mayo Clinic in Phoenix Arizona.  He just completed the 4 weeks of radiation on Friday.  If the cancer hasn't spread, he will have a liver transplant soon. We have 4 live donors and hope one of these wonderful people are a match. Klatskins we are told will come back after chemo/radiation quickly, so we are up against the clock to get that liver and duct out.  Mayo does have a protocol in place for treatment and transplant for some types of bile duct cancers.  I'm wondering if ANYONE out there has went through this protocol and can tell me what's around the corner.  Comments are very much appreciated. 

On Aug 22, 2010 1:12 AM powersaz wrote:

On May 26, 2010 9:03 PM Harpreetsonia wrote:

Hi my name is sonia,

My brother is 33 and just got diagnosed with klatskin tumor. His tumor is 2cm by 1.5 cm in the right hepatic duct. There is a lymph node near the tumor. they are not too sure if its effected. He had ECRP and a stent in his liver to drain the bile. We are waiting for the laproscopy yet since last week. There has not been a biopsy done as the doctor could not reach the tumor.

Any one out there please advice me of the best ctreatment possible. I just read about the Mayo clinic. His tumor is spread towards his liver too.

Please help

Harpreet

Hello:

My husband has had PSC for 8 years - he is 53.  He has developed a 3 cm Klatskin tumor and is going through chemo/radiation at Mayo Clinic in Phoenix Arizona.  He just completed the 4 weeks of radiation on Friday.  If the cancer hasn't spread, he will have a liver transplant soon. We have 4 live donors and hope one of these wonderful people are a match. Klatskins we are told will come back after chemo/radiation quickly, so we are up against the clock to get that liver and duct out.  Mayo does have a protocol in place for treatment and transplant for some types of bile duct cancers.  I'm wondering if ANYONE out there has went through this protocol and can tell me what's around the corner.  Comments are very much appreciated. 

Herpeet-

We were told at Mayo that they wont biopsy the klatskin tumor because if they do, it will spread.  I would call Mayo or UCLA asap for your brother.  

Hello,

These last few comments with the log in names are a bite confusion.

I think I speaking with Sonia, if so I have some information you may want to hear.

The person respondind to Sonia has no name and make it hard to address the situation...

Give your first name and you will make it much easier for us to respond.

If Herpeet is Sonia please say so.

There is a lot of things beinging said that may not hold water.

If you have aquestion for Leonard (Solutions) please feel free to ask.

Thanks Leonard from Alamo California

Hi Teresa,

Have you had surgery or just taken chemo?  I had bile duct surgery in April 2009 and had the whipple procedure, 11 1/2 hours of surgery.  Dr. Russell Howerton at NC Baptist/Wake Forest University is an excellent surgeon and is a specialist in this surgery. I can't say enough good things about him and his great team of doctors.  They had to take 1/2 of my pancreas, and several lymph nodes that it had spread to.  I had 7 weeks of 5FU chemo and radiation.   After that I had CT scans, they didn't show any signs of cancer, but my tumor markers kept going up and down.  I took Gemzar from 4/1/10 - 7/12/10.  Now I'm taking 3 treatments of Taxotere and have taken 2 so far.  I've been told by my oncologist that there is no tumor marker test for bile duct cancer and they have to use the one for pancreatic cancer.  My tumor marker was 7000 at one time and starting slowly coming down.   It was down to 47 last month, but went back up to 141 a couple of weeks ago.   Is that what you're talking about when you say it started out over 515 and has gotten down to 15?  The doctor's like it to be below 35.  They're thinking now mine has something to do with my blood glucose level.  My surgeon said the whipple procedure could make my blood glucose levels go up. 

I pray for you and good luck to anyone that has this very rare cancer. 

Linda