Cholangiocarcinoma (bile duct cancer) resistant to Chemo

Stanford,

M brother was diagnosed over three years ago and is still hanging in there.  We have done a lot research.  The best treatment is still resection.  Dr. Wallis Marsh at UPMC did my brother's when many other doctors said that they would not do it.

I also read a study lately where they gave patients the MUC-1 vaccine following resection.  4 out of 12 patients were alive and cancer-free 5 years after the resection.  I wish we had done this after my brother's resection.

Diet is also very important.  "Anti-cancer: A new way of life" is a great source of data on this.  My brother's diet and supplement list are posted athttp://health.groups.yahoo.com/group/Bile_Duct_Cancer/&nbs the files section.

If they do a bioposy, you should ask for molecular profiling.  It can tell which types of chemo will and won't work a patients tumor cells.  It's not perfect, but it may help to select the best chemo.

Having a good attitude helps too.  Crazy, Sexy, Cancer is an interesting moving for boosting positive attitudes.

Hope this helps...

Hello Naomi...

Well the first thing the doctors must consider is suurgery. This is the best way to handle Primary Bile Duct Cancer especially if it is extrahepatic BDC.

If surgery is not an option Cyberknife radiosurgery may be an option.

My wife had extrahepatic BDC...she had surgery. They believed they removed 100% of the cancer...but it is very difficult to achieve 100%.

One year or so later in a PET/CT Scan cancer showed up.

She had 7 Cyberknife treatments along with 3D-Conformal Radiation...That worked for about three years and then the cancer showed up again/

Bottonline....Surgery first if possible and then anything else that works.

Take care and I wish all the best for you. As you mostly know by know BDC is a very rare and a very serious cancer.

Bless you...

Leonard from Alamo California

Hello Naomi.

Sit down and take a breath...I am assuming you are speaking about Stanford Medical Center in Northern California.

My wife was treated at UCSF Medical Center in San Francisco. They are both very, very good Medical Facilities.

They both handle Bile Duct Cancers.

Naomi...You mom is in an excellent medical facility.

Okay...surgery in not an option...I didn't think so. I am assuming they have a very good reason not to do surgery. There are many reason surgery is not an option. It may be the location of the tumor, this is the main reasons.

Well, Are they suggesting 3D-Conformal pin pointed Radiation with 5 to 7 treatments of Cyberknife at the end of the pinpointed radiation treatments.

My wife Karen was doing oral chemo and the radiation at the same time. But remember Karen had surgery first. She also had IV chemo later the same one you mentioned.

Naomi..Also be aware these treatment are NOT a cure. They will prolong life...but sometimes the quality of life is not the greatest.

Remenber everyone is different...If the doctors at Stanford want to move to radiation and chemo...they are hoping that is an asnwer to prolong life.

Do you know how Cyberknife Radiosurgery operates. Do you know what it does to the tumor.

My personal opinion...if standard surgery is not an option...go with Cyberknife... and then possibly chemo after the radiation treatments.

This is not an easy situation. This cancer is horrible. The last six month of Karen life was awful...the last three months were beyond understanding and horrible.

There are many on this chat website that hate me for telling others the truth...But I believe if you know what's next you will be able to handle the shock that awaits you and your family. I personally do not care what my critics say about me or to me. They are the ones sitting in the dark.

I lived it for over 7 long, long years. My wife and I battled it together. In those 7 plus years we became like siamese twins.

In closing...Maomi, remember Stanford is one of the best. Listen to your doctors and ask questions...there is never a stupid question. I know some doctors have an ego issue...to bad for them...sit their butt down and and tell them to answer your questions. Also remember, they may not have an answer...if that's the case make them say that. Do not be worried about hurting their ego.

I hope some this helped. If you need more specifics, please just ask me. I don't have all the answers. But I lived it 24/7 for over 7 years. I'm just a care-giver...I am not a doctor. But remember a good care-giver may be more helpful to your love one than the doctors.

Take Care...I wish all the best for you your mom and your entire family.

Leonard from Alamo California

On Dec 29, 2012 8:14 AM Stanford wrote:

Leonard, She is not qualified for surgery or transplant. So we are looking at cyberknife or chemo gemcisplatin. Also, we are doing it at st Stanford. Her tumor is 3cm, not spread. Anyone, anyone can give us advise and share your experiences. We are desperate. Naomi

Why is she not qualified for resection?  3cm is not that big.  Is it in a bad location?

My brother was not eligible for resection at first since it was too close to teh vena cava.  A few rounds of gemzar + cisplatin and his diet changes helped to shrink the tumor.  Sloan Kettering (best in the country some say) declined to do it, but Dr. March at UPMC performed some "herioc" surgery for my brother.  It was risky, but I don't think he would be here today if that surgery had not been done.  Bruce also takes a variety of supplements with anti-cancer properties (see the Yahoo group I posted yesterday).  Circumin has done really well in studies with chemo.

My brother's cancer came back, but he has had three reasonably good years.  He just recently went downhill due to a bile duct leak.  We are looking into the vaccine trials for him.

My advise is to get lots of opinions.  I thought sloan kettery would be great due to their reputation, but UPMC turned out to be better.  The "regular" doctors will poo-poo the supplements and diet, but I say do it anyway.  What do you have to lose?

Brian

Well Hello Brian...Nice to hear from you.

I'm sorry to hear about your brother's cancer resurfacing again...as you know I have been through that a few times with Karen.

I wish your brother all the best.

Leonard

On Dec 29, 2012 6:55 PM Solutions wrote:

Hello Naomi.

Sit down and take a breath...I am assuming you are speaking about Stanford Medical Center in Northern California.

My wife was treated at UCSF Medical Center in San Francisco. They are both very, very good Medical Facilities.

They both handle Bile Duct Cancers.

Naomi...You mom is in an excellent medical facility.

Okay...surgery in not an option...I didn't think so. I am assuming they have a very good reason not to do surgery. There are many reason surgery is not an option. It may be the location of the tumor, this is the main reasons.

Well, Are they suggesting 3D-Conformal pin pointed Radiation with 5 to 7 treatments of Cyberknife at the end of the pinpointed radiation treatments.

My wife Karen was doing oral chemo and the radiation at the same time. But remember Karen had surgery first. She also had IV chemo later the same one you mentioned.

Naomi..Also be aware these treatment are NOT a cure. They will prolong life...but sometimes the quality of life is not the greatest.

Remenber everyone is different...If the doctors at Stanford want to move to radiation and chemo...they are hoping that is an asnwer to prolong life.

Do you know how Cyberknife Radiosurgery operates. Do you know what it does to the tumor.

My personal opinion...if standard surgery is not an option...go with Cyberknife... and then possibly chemo after the radiation treatments.

This is not an easy situation. This cancer is horrible. The last six month of Karen life was awful...the last three months were beyond understanding and horrible.

There are many on this chat website that hate me for telling others the truth...But I believe if you know what's next you will be able to handle the shock that awaits you and your family. I personally do not care what my critics say about me or to me. They are the ones sitting in the dark.

I lived it for over 7 long, long years. My wife and I battled it together. In those 7 plus years we became like siamese twins.

In closing...Maomi, remember Stanford is one of the best. Listen to your doctors and ask questions...there is never a stupid question. I know some doctors have an ego issue...to bad for them...sit their butt down and and tell them to answer your questions. Also remember, they may not have an answer...if that's the case make them say that. Do not be worried about hurting their ego.

I hope some this helped. If you need more specifics, please just ask me. I don't have all the answers. But I lived it 24/7 for over 7 years. I'm just a care-giver...I am not a doctor. But remember a good care-giver may be more helpful to your love one than the doctors.

Take Care...I wish all the best for you your mom and your entire family.

Leonard from Alamo California

The Solutions Guy,

Quote: "There are many on this chat website that hate me for telling others the truth."

For one thing this website is more than than just a chatting website! 

I don't thing anyone hates you for telling the truth as you see it, but maybe they are tired of your arrogance.

We are all here for information regarding the patient or the care giver.  I have been both. Contary to a previous statement of yours that caregivers suffer more than the patient is a joke!  The patient not only worries about others but also suffers from the pain and despair from the illness.

Chas

Thanks.  Glad to see you that are still out here.  I think of your story and Karen's story sometimes when I am talking with my brother and his family.  They are getting a little battle weary, but still hanging in there.  He is more than hallf way to his goal of seeing his daughter graudate from high school, though.

My husband was at stage IV when he found out.  Healthy one day...sick the next.  He was 37 years old.  Cleveland Clinic gave him 2 to 6 months.  He lived 4 months and 10 days.  It really doesn't surface until it is to late usually.  I tell people daily what my husband passed away from.  They say "what",  they have never heard of this.  So I begin to tell them and do some reasearch..  It needs to be know world wide what this type of cancer is.  I want to spread the word and get it out there so people are aware.