Topic: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Hello all.

My mothers starts her chemo in about 5 days and im reading mixed reviews about chemo treatment for this type of cancer?

The NHS have no clinical trials to offer us and after contacting germany about my mothers cancer they said Radiotherapy would be the best way to go?

Im really confused now. Her bile ducts are effected and part of the liver. She's been told she has only 6-9 months to live?

Any experiances or clincs that anyone can recommend??

Please help.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Many of us have had radiation therapy.  I did last year, and together with chemotherapy, my tumor shrunk 50% and my health improved drastically.

My chemo is Gemzar and Xeloda on a three week cycle. 

Hang in there.  A year ago I was told I had three weeks to live, and I'm still alive and kicking.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

My husband does not have cancer in his liver but we are plagued with the bile ducts. After a Whipple surgery 3 years ago the monster returned in April. We have been told by 4 doctors, yes 4, that chemo will not work on this type of cancer. We have opted to never do chemo. A liver tranplant surgeon here told us that radiation is the best way to go as did our Oncologist and the doctor who did the Whipple and  our main Oncologist. Teddy is having IMRT radiation now as the Insurance Company would not OK the cyberknife until he has been "radiated".  All I can say is we have opted for quality life over length. Teddy is 76 and has done quite well except for tiredness. Good luck as there are big decisions to be made. You have come to the right place and I know you will get some good advise here, you are not alone!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

How old is your mother? What is her current condition? Is she weak? How much weight has she lost? I think these are factors that should be considered when deciding whether or not to do chemo.

Patty

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

andyuk,
My dad was diagnosed in Nov 07.  Surgery was not an option.  He had two stents put in to open up the bile ducts as he was very jaundiced and itching alot.  Dad started a treatment of 5FU with radiation...6-7 weeks.  There was a little growth with suspicion that it had spread to lungs.  He then started 6 wks of Gemzar. The tumors got worse.  By this time it was July 08.  He was told that he had 4 weeks left to live.  Then we found a new oncologist who suggested treatment with Tarceva and oxyplatin.  The new oncologist said that had he been involved he would have started dad with this protocol from the very beginning.  Dad has been 4 weeks on Tarceva and two rounds of oxyplatin.  His last CT scan showed no change which is a good sign.  Before the cancer had been quickly spreading.  We're hopeful that this new treatment will help and control or shrink the cancer.

We were told that there is no cure for choloangiocarinoma.  It's a terrible disease.  You've come to the right place to get information.  This site has an abundance of information from people with large hearts who are willing to share.

Good luck and God Bless

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Everyone is different. Some people respond very well to one drug, but not another. My husband is in the 20/25% that had an almost complete response with Gemzar. It shrank his tumor from 8cm to a small spot of live cells encased in dead cancer cells. He had surgery and it was removed with clear margins. We went to the doctor yesterday, and he will have 2 rounds of Gemzar as insurance to kill any microscopic cells in his body. Try not to be discouraged because many of us have seen that there can be hope when it looks hopeless. God bless you and your family.

7

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Dear andyuk -- I'm so sorry you have to come to this website, but as others have said, you will receive exceptional support here.

My sweet husband Brad just passed on August 17 from CC.  That is of course the bad news.

But the good news is that he was diagnosed in 2006 and was able to live a quality life for many many months.   His CC was even suspected in 2005, although the docs failed to mention it. 

Brad began radiation in 2006 along with receiving chemo (Gemzar & 5FU) through February 2007.  The oncologist kept monitoring him with CT's, and he again began chemo in the summer of 2007, due to changes (tumors)in the scan.  With even more changes, Brad again began chemo, this time with Oxalyplatin and Gemzar.  Unfortunately, in July this year, he developed an infection and sepsis, which greatly compromised his health, and ultimately lead to his death. 

No doubt CC is a miserable disease, but Andy, don't let statistics get in the way of your mother's (and your) life.  Fight!!   And know that you have an army of supporters at this extraordinary site.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Andy, Check out this article and ask your doctor if this is a potential for your mother.  This was just published today.  I'm going to show it to my dad's dr to see what he says.

Radiofrequency Ablation for Unresectable Tumors of the Liver

http://www.redorbit.com/news/health/153 … iscussion/

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

It seems that different docs give different options for what is best.

My dad is 82 and was diagnosed on July 29, 2008. The diagnosis resulted from a hospital stay for jaundice and weakness. A temporary stent was installed and has since had to be replaced this August.

Jefferson University Hospital wanted to start chemo with surgery as a possibility after shrinking the tumors, while another hospital wanted to  do only chemo as a palliative without much hope. Fox Chase wants to start off with surgery and also do radiation, and this is the path we have chosen.

It's hard to know what is right, especially when the experts disagree.

DianeC, I'm sorry to hear about Brad. Did he have a stent that failed? Is that why the infection happened?

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Thanks for all you comments. My mother has just started her chemo (Gemzar) and the doctors will do another ct scan in 3 months to see if it's shrunk enough to operate.

We are still seeking out some surgeons around the world to see if anyone will be willing to operate. Dr canady has said it's possible but only by what he calls an aggressive surgeon. Dr canady needs to see a 3d imaging scan first so we are also seeking out were this can be done?

It seems everyone has different opinions. Im really confused over the whole situation.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

andyjuk...In our quest of finding a surgeon qualified in resection we had mailed the 3D scan to three physicians familiar with liver and bile duct resection thus allowing us to make an informed decision.  And yes, opinions varied greatly but, then that is to be expected with a complex surgery such as CC however, as you will read, on this forum, many members have undergone  resections, successfully.  I believe, confusion is part of the situation while juggling all the information and opinions coming your way.  The members on this site are so very helpful in helping you along in this maze.  In the mean time I would continue gathering all medical records pertaining to your Mom (including all scans, lab reports, doctor's notes, etc.) and have them ready to forward those to several medical institutions or physicians who could possibly review your Mom's medical condition.  Sending tons of good wishes your way.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Andy,
        Did you read my reply to you in the introductions section? I live in London and gave you a few suggestions. Regarding surgery I suggest King's College is the place to go but I also gave Dr Wasan's phone number at Hammersmith. He does sir-spheres if this is of interest. Please contact me further if you need more information.
        Best wishes,
             Pauline

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

my first message...my husband developed cc feb 07 whipple mar 07 clear margins  now  ca 19 9 is 3000  slated to start chemo and rad in 3 wks   otherwise feeling and doing  great  golf every day   its hard to see a  otherwise health rustic man be faced with such a bad  time ahead of him  do we wait for other signs of disease progression or start treatments while he is on the upswing     his post whipple health has been remarkable     jan

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

janettay.....hello and welcome.  Feeling good and looking healthy can be so misleading.  My husband also did not show any signs of being a cancer patient until the very end of his life.  In fact, he became more handsome as time went on and we would tell him so.  What type of radiation is being contemplated with your husband? And what type of chemo regiment are you considering?
Again, glad for you to have found us.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Sounds like my husband who had a Whipple August of 05. Cancer returned this last April where the duodenum used to be. He just had 5 weeks of radiation daily in hope of getting cyberknife in October. Where are you and where did his cancer return? Teddy is going to be 76, post Whipple great after kinks ironed out. Golfed and still working part time.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

marions      we are in memphis    chemo will be gemzar and 5fu  rad to surgical bed area external beam      19 treatments    charlie is 65yrs old   dr.s do not seem to be in a hurry  do i assume  this to be due to predicted outcome...  im  confused    jan

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Did he have a Whipple. Again it depends on what size and where the  cancer is but perhaps he is a candidate for cyberknife?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Jan.....I am not a physician and can only pass on what I have experienced personally with my husband and that what I have read and learned along the way mainly, through this site and some of the conferences attended by me.  When reading through the postings by other member you will notice that all of us experience what you are experiencing and confusion certainly, is part of it.  I don't believe for anyone predicting the outcome as of yet as your husband is being treated, presently.  I assume for upcoming scans to be showing a clearer picture, soon.  Please, don't give up hope and please, continue to lean on this unique family of CC where everyone is always ready to share with you and support you, all the way.  Sending tons of good wishes your way.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

marions...thank you  i have learned so much  by reading everyones comments   for all to share a common ground in that cc lives in their worlds there are as many different stories  of coping   and living   in spite of   the difficult treatments and outcomes   thanks to all for putting your lives and thoughts out there      i fully understand that only one knows the future and he holds all of us  in the palm of his hand        jan

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Thanks for everyones help. The good news is that we have been in contact with prof lodge at leeds in the uk. We sent all the scans and reports to him and he hasn't ruled out surgery saying he thinks he can do something.

My mothers health is very well at the moment and she hasn't had any real side effects from Gemzar which is good. Prof lodge wants to wait for the 3 months of chemo to finish then we will have another scan done.

We hope and wait.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Andyuk
Glad to hear your mother has few side effects from Gemzar.  I finished 4 cycles (8 times) of Gemzar in July 08.  Be sure and tell your mother to drink lots of water the day of infusion- that flushes the chemo thru your kidneys and will help prevent any problems with the kidneys.  I am now on Xeloda - one week on and one week off.  Each of us are so different - so do a lot of reading on this site, it really helps you understand all the procedures.
available.   

Nancy

"And my God will supply all your needs according to His glorious riches in Christ Jesus." Philippians 4:19

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Has anyone been treated for cholangiocarcinoma using a drug called Nexavar? (sorafenib)  I had a liver resection 2 1/2 years ago....and this June a mass was found on abdominal wall and nodule on the liver.  Mayo oncologists recommended this drug.....but in reading I am not seeing anyone mention it?? Any info would be appreciated...thank you

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Donna...at times, it helps to re-post your question as it can be lost due to others writing in.  Sorafenib is not a new drug therefore, I would assume for someone else possibly having some input on this.  Anybody?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

http://www.nexavar-us.com/

Donna try this link.  The drug has been around for a while and was orignally used to treat kidney cancer.  It was approved in June by the FDA to be used for advanced hepatocellular carcinoma.  While not officially approved for Cholangiocarcinoma, our oncologist is using it and I think he said there had been a small drug study for it's use in cholangiocarcioma.  The problem is that some insurance companies may not pay for the drug since it's not specifically approved for Cholangiocarcinoma.  My mom is going to probably add this to her arsenal.  We see the oncologist on Monday. 

Hope this is helpful..........

Cherbourg

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Cholangiocarcinoma And Chemo Treatment? Is This The Way To Go???

Thank you cherbourg for your response.  I had read the info at that site, am hoping someone here has used nexavar for treatment.  All the posts I have read I don't see it mentioned.  It has been approved for liver cancer as of last year.....I guess I was looking for someone who had been treated with it and wanted some positive input.  Thank you 

Does anyone have suggestions for itching??  I have tried several lotions, creams, hydracortisone, benadryl ........any other ideas out there??