Hello

Dear Lourdes – I was so disappointed in City of Hope. I could not get calls back from them, despite sending all the information they asked for mon my husband. It was so disappointing that a cancer center had such poor follow up. Many people with CC don’t have a lot of time to wait around. I also learned that when you or a loved one has cancer (especially stage IV) every moment is so precious and for someone else to not call back is like saying your life doesn’t matter to us. Well, the lives of our loved ones matter to us, so I would avoid City of Hope and pursue USC in a heartbeat. (If is of no consequence that USC was my husband’s favorite football team. lol.) Blessings, Susan

Lourdes…another place for information are Dr. Lenz and Dr. Anthony B. El-Khoueiry at USC. Both are very familiar with this cancer.
The enclosed link leads you to the NCI site re: second opinions.
http://www.cancer.gov/cancertopics/wyntk/liver/page9
Don’t be afraid to ask the following questions:
How many cholangiocarcinoma patients have you treated?
Why do you recommend this treatment?
Should we also be consulting with a radiology oncologist?
Additionally, please take along a tape recorder or have a notepad handy. Much information will be coming your way and you want to be able to refer back to your notes at any time.
Good luck and please, stay in touch.
All my best wishes,
Marion

Dear Lourdes –

Our hearts reach out to you, your dad and your family during this difficult time. CC is a roller coaster ride that is not fun. The best things are to have a positive attitude, make as many memories as possible, and tell each other often of your love and what you have enjoyed, learned and appreciated from being in this family. Second and third opinions are often very helpful. Please visit and post often to keep us updated and so that we can walk through this with you. Blessings, Susan

Lourdes….I don’t have much to add to Margaret’s and Lainy’s great statements but, I would also like to welcome you to our site. As has been mentioned please, reach out to all the wonderful members on this site. And, remember you are not alone because, we are in this together.
All my best wishes,
Marion

Hi Lourdes:

Welcome to the best internet side for CC patients and their caregivers. No one really wants to join this site, myself included. But now that you have joined, be prepared to welcome a whole new family into your life. You will find that it’s a family who cares, who understands and who will give you guidance and support when you need it.

Since your dad was just diagnosed, I would advise you to read, read, and read some more about this cancer. You can do that just by reading the posts on this site. As you encounter things it will raise questions that you should WRITE down for your dad’s doctors.

Where is your dad’s cancer? Is it one tumor or multiple tumors? Is it contained within the liver or has it spread? How old is your dad? Is he in good health otherwise?

Both your dad and his caregiver need to educate themselves about this cancer. And you need to ask a lot of questions of his doc’s. Make sure that his docs are familiar with CC and don’t be afraid to seek 2nd, 3rd and 4th opinoins as sometimes that is necessary.

Where does your dad live? Are they any major cancer centers closeby?

Since my husband Tom was diagnosed three years ago I have learned way more about this cancer than I ever thought possible. In fact some of his doctors have asked me if I’m a doctor! (Ha, I wish)

Things to tell your dad….never take no for an answer, instead ask what else they can do. Keep a POSITIVE attitude. Ask for help when it’s needed and graciously accept help when it’s offered!

The never accept no for an answer is important. In Dec. ’09 my husbands ‘then’ oncologist told him that the new tumor that he presented with was inoperable. When I asked about radiation and/or chemo that onc told me that nothing could be done, that my husband should go home and get his affairs in order, that he would be dead in 6 months. As we drove home that afternoon, I told my husband that we were not accepting that. We got those 2nd, 3rd and 4th opinoins. The next three specialist we saw all agreed that it was inoperable, but they all thought that radiation and chemo could be helpful.

Tom underwent 28 rounds of chemo, then onto oral chemo, Xleoda and he is still here and we just started the 20th month of life since that onc told him there was nothing that could be done. Tom has a external bile drain that keeps him from being so yellow, but other than that, all of his number’s look good. Not normal but a new normal for him.

We have had a lot of firsts since that day in Dec. ’09. Three more birthdays, three more holidays, a new grandson who carries Tom’s name, three more years of marriage.

It’s not always easy, granted, but when Tom is down, I am his moral support. A CC patient needs someone who can be there for moral support if nothing else. He needs someone who can speak up for him if he is not capable of doing it himself. He needs someone to go to his doc visits and someone to journal what is being done, when it is being done so that he has good records and those questions that are asked can be answered.

Is your dad a candidate for a resection? Tom has a successful resection in June ’08, but presented with a new inoperable tumor in Nov. ’09. We have hit some very low points during our journey but we are currently in a holding pattern and are lovin every minute of it.

Feel free to ask any questions on this board and feel free to email me any questions. You can read more about my husbands journey by searching for my login name, mlepp0416, ‘My husband and Cholangiocarcinoma and then My husband and cholangiocarcinoma – part 2’.

Go with God and tell your dad to KEEP KICKIN’ THAT cancer.

My thoughts and prayers are with your dad as he begins his journey.

Margaret