Topic: Newly Diagnosed

My sister has just recently been diagnosed with cholangiocarcinoma. As you can imagine we are all completely devastated by this news. She is in her early forties and has two young children. She has been informed that surgery is not an option as it has spread to the nearby lymph nodes although there is no evidence to suggest it has spread further than this. She is due to start chemo with Cisplatin and Gemcitabine very soon. Iam desperately searching for anything postive on this treatment. She has everything to live for and we simply don't want to be without her. Any positive news from anybody would be welcomed.

Thank you to you all.

Re: Newly Diagnosed

My heart and prays go out to you and your family.  We are also a relatively newly diagnosed heart broken family (October 2007).  We are in the midst of searching for options.  My husband refused chemo to "sustain life" and we are trying to find alternative routes and procedures.  This is the only "positive" I can offer you - keep searching, do not give up and keep the faith in the Lord.  I have read about several people on this site who have years of living under their belt since learning of their disease.

Karen

Wishing all God's blessings!

Re: Newly Diagnosed

Karen, thank you for your response I am so sorry to hear of your husband it must be heartbreaking for you and your family. We have been informed that this particular type of chemo has minor side effects and has now progressed into phase three of it's trial, the results so far have been promising. Although just how promising is unknown as I have simply not been able to find anything significant about the trials. We do know that she will not loose her hair which I am pleased about. I truely hope we see that the treatment start to have an impact soon and she starts to feel the benefits. I am certainly not giving up and I won't allow her to either.

I certainly wish you, your husband and family all the luck in the world.

Re: Newly Diagnosed

Karen,
don't know whether you already have looked at the Coburn blog and also have searched under Alternative Treatments. 

Wishing for the absolute best
Marions

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

5 (edited by marions Tue, 11 Dec 2007 11:27:54)

Re: Newly Diagnosed

Janecw,
So sorry to be hearing about your sister, but am happy for you to have found this site.
You will find tons of good information in regarding the treatment protocol your sister has chosen by using the "Search" function on top of the page.  Also, when reading through the site you will notice "hope" is what drives all of us with some remarkeable results.   
My best to you and your family
Marions

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: Newly Diagnosed

My wife, Kathleen, was 39 when diagnosed with cc 5 1/2 years ago.  She has received a variety of treatments and she did have some good success with chemo a couple years ago.  I believe Kathleen's age and otherwise good health were factors in her success and that may benefit your sister also.

I hope your sister has favorable results with her treatment.  Keep exploring her options and try to get other physician's opinions.  There are a lot more options now than there were 5 years ago and new treatments are continually being developed.

Best of luck to your sister and family.

Re: Newly Diagnosed

My partner, 59, has always been strong, diagnosed intrahepatic CC April 2007, received 2 times Chemo embolisation/ injection from artery in a hospital in China, the medicine is combined Chinese herb (extract) with some chemo medicine I cannot translate. The tumor seems not visible or say shrunk from last scan in November.

In this site you can find more ways which working. I hope our experience is some information adding for you; also the insurence we have refuse to pay the treatment in China, named it is not regular treatment.

Re: Newly Diagnosed

Bill,
Thank you so much for your response your message has given me great hope, I too believe that my sisters age will be of great advantage and to know that your wife has survived this dreadful illness for so long is fantastic news.

Trying to get another opinion however can be difficult as how do we really know that we are not already being given the correct treatment and advice when you are not given an alternative. We live in the UK however I would go to the ends of the earth if it would help her.

Thank you again for your response and i really do wish you and your wife all the luck in the world.

Re: Newly Diagnosed

Jane Cw.... I was on this same combo about 2 years ago.  It did show promise at first for me but it became a bit intolerable because of the nueropathy in the fingers and feet.  I do feel it was of help for me for a while but not something I wanted to stay on very long and switched to something else.  It is certainly a good chemo combo as long as you can stand the side effects or at least be ready to combat the side effects for a while. I Wish your sister the best. I do believe the younger and healthier the better the out come.  Not to say someone more elder like my self can't handle it but I think it's a little rougher just because natural aging and funtioning  lessons as we get older.  It is just a simple fact.
Again, Best wishes and support!
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Newly Diagnosed

Hi Jane - my dad has had moderate success with both gemzar and cisplatin though on separate regimens. Cisplatin however has been very, very tough on dad and he has lost tons of weight and has been on a white blood cell roller coaster. It is a relatively old generation chemo so it's relatively proven but certainly tough on the body. I would consider a palliative treatment in parallel to counter neutropenia and digestive tissue damage. Most palliative clinics and specialty centers have options for this.

Best of luck and hope the treatment works!!

Amilcar

Re: Newly Diagnosed

Jane,
I have said this to another poster and I hope it helps...When I think of things and reasons to fight this disease the top two are my husband and my sister (with the order switching on which has annoyed me most the most recently.HA!) My sister and I are close, very close-though the cc has made us slightly return to our big sister/little sister roles where Andrea feels the need to boss me around. Mom says it is just because she is scared and her one way to control the situation is to boss me! Anyway, I am sure your sister feels the same way. Sisters are very special. I think that the bond my sister and I share is one of the things that truly help me through this. Plus, I know she will kick my butt if I dont stay proactive and on top of things.

Take care. You are going to find loads of answers and support on here. I am wishing nothing bu the best for your sister.

Kris

Just reread my post and I really should include my parents on reasons to fight. They are great!

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Newly Diagnosed

Hi Jeff
Thanks for your response what type of treatment did you switch to? did you find that to be as effective in treating the cancer as gemcis? My sister has been told that the side effects should not be too bad so I was quite surprised to see that you suffered quite alot on this treatment. I hope your well at the moment and wish you the very best.

Hi Lucian thanks for taking time to reply do you know the name of the alternative treatment your partner has been on that seems to have had posive results? Good luck and I hope it continues to work well for you both.

Thank you to Kris also you are right my sister and I have always been close but this has brought us closer and it makes you realise how special your family is, good luck to you all.

Hi Amilcar so sorry to hear about your Dad I hope his treatment proves successfull keep hoping and fighting, thanks for replying