stacie

Figen,

There are many patients taking Xeloda right now. Mark is one of them. You can also find links on the general information page under the chemo worksheet.

Stacie

Irene,

Just know that you are not alone. Cry your eyes out, take a minute, cry them out again, then dab them dry. Gather your family and friends together and go to work. You will have a lot of ground to cover and it will help to split up the work.

There are a few things you need to know before you start. You’ll need a CT and PET scan to know exactly what you are looking at – that means, has the cancer metastacized and to where, do the oncologists in your area have any experience with cholangio, and most importantly – what does your husband what to do.

As painful as this is for you and your family – I’m not sure the caregivers can really understand the emotions that the patient is having. Mark (my brother) seemed stunned and almost immobile – while he worked that through, we gathered information as quickly as we could. We wanted to make every path available and then let him choose the path most comfortable for him.

You must seek other opinions and several of them. Any oncologist that tells you there are no options and no hope with cholangiocarcinoma is out of touch with the latest research. Is there a cure if it has metastacized? No, modern medicine can not offer that to us at this point, but it can offer time – this ofcourse is not to say that naturopathic options that heal aren’t out there as well.

I hesitate to say this, but I personally feel that it is risky to use an oncologist who is very conservative (this means that they will only try things that have been specifically tested on this specific kind of cancer and have shown good results) I would agree with this approach if there was any kind of substantial research being done on cholangiocarcinoma, but unfortunately there isn’t and we must rely heavily on the data from other hepatobiliary cancers at this point – this is an aggressive cancer and we will never touch it with oncologists who aren’t willing to stretch just a bit and find out what works. There are many out there willing to do this, but there are many who won’t even touch it.

If your husband wants to fight this cancer then he needs to make it clear to the oncologists that you visit, that he wants to fight in an aggressive manner. If he doesn’t or he wants to take a natural path – I also think there are some very good options out there as well.

You have a lot of big things ahead of you, but just know that we are all here to help ease of the burden. Ask anything you need and read everything you can get your hands on – be sure to let family and friends help, they don’t know what to do either and together you can find some direction.

Good luck and keep us updated.

Stacie

Lisa,

Your latest post was shocking. A couple of things. On the general information page of the website, you will find the information for T-Gen, you may want to have both of your brothers have biopsies sent and tested there to see what they can tell you. Mark’s insurance covered this procedure.

The interesting thing which may be helpful to your family is that most of the chemo and procedures you will be looking at will be the same because cholangio borrows a lot of information from pancreatic cancer because they are both in the hepatobiliary area. This will make your research a bit easier as it will serve both of your brothers.

There is quite a bit of information on whipple procedures on the website, just use the search.

Lisa, so sorry about the latest news. Please keep us updated. You and your family are certainly in our prayers.

Stacie

Mo,

This is great news. If they think she is resectable, go and get it done. After the surgery you will need to make some careful decisions. Chemotherapy or not. You may also want to look at some alternative therapies and certainly look through the website so you can get as much information as possible.

Keep us posted on what is suggested to your friend. When we first began flying around and seeking out opinions for my brother, I took a tape recorder and recorded every conversation we had with a dr. I would then type up everything and we could look carefully over the notes to make decisions. Also, other members of the family who didn’t go to the appointments could be fully updated.

Really the patient is the only one who can make the decision. But it helps if you can read through things after the appointment. It’s hard to take in all the information especially in the whirlwind initial stages of this disease. The patient, is sometimes intimidated and even overwhelmed by the amount of information. This makes it difficult to decide the best thing to do. Be sure to ask the Dr’s you visit – how questions can be addressed, via email or possibly phone calls. You will need to get a good amount of information before you make a decision. It’s much easier when you know you’ll have someone you can ask questions.

Please let your friend know that she is joined by many on this site her age. Unfortunately, by many younger (21 is our youngest) and also by many who are years out and still fighting this disease. There is much hope.

Good Luck!
Stacie

Caroline,

Mark’s naturopath wants him to start essiac as well.

Teresa,

Thanks for sharing your son’s story. Our hearts ache with yours.