Topic: My brother just diagnosed with cc

Hello.  My brother was diagnosed w/ cc and is undergoing experimental chemo.  After the first 4 rounds his tumor has shrunk and so 4 more rounds are scheduled with the hope surgery can become possible.  He feels so sick all the time and in addition to having to cope with the treatment and the disease his insurance co says this is experimental chemo and won't pay for his treatment. The cocktail they are using on him has only approved for lung and breast cancer, not cc.  So far all I've been able to do is comfort our family and pray for him.  He says he plans to sue BlueCross for the money, but now he is out of pocket $15k per treatment. Mostly I feel so sad and helpless, but my emails to him are all encouraging.

Any suggestions for family members like me watching this horrible disease dismantle a family member's life would be most appreciated.

Re: My brother just diagnosed with cc

Lauren,

It sounds like your brother has a great sister in his corner, I am sorry to hear of his diagnosis, welcome to this club nobody wants to join.

I guess the best advice I have is that, if he has not already done so, I think you should encourage your brother to visit this website and spend some time reading the discussion board, there is a wealth of information and support.

This disease is very complicated and there are many treatment options and a lot of decisions to make. There is a section on insurance issues that might offer him some advice on how to get Blue Cross to pony up the $ or where else he might get help paying for it, for example see this post:

http://www.cholangiocarcinoma.org/punbb … hp?id=1599

Not sure what else your brother is doing in terms of treatment but I and many others on this board think that nutrition plays a part and there is a section of the discussion board devoted to it so I encourage you to spend some time reading the posts. If you live near your brother and are feeling like you want to do something but don't know what to do, perhaps you can prepare him some meals.

While my mother couldn't beat this for very long, I am encouraged by the experiences of others and think your brother should consider other options, I thought this post was very exciting:

http://www.cholangiocarcinoma.org/punbb … hp?id=1318

Others who can offer more expertise about treatment will probably want to know the answers to the following questions:

how old is your brother?
what is in his chemo cocktail?

Patty

Re: My brother just diagnosed with cc

Lauren...welcome we are happy for you to have joined us.  Patty makes many comments of value certainly, don't feel discouraged as of yet.  Please, forward the proposed experimental chemo regiment recommended by the attending physician.  Most likely some, if not many others have been prescribed the same medication, already.  Also, I might want to check against other information available as generally these chemo regiments are discussed and studies are presented at the major clinical symposiums.  Most of all please, don't give up hope.  Also, others may very well share their own experiences in re: to fighting the insurance companies and how they were able to obtain coverage for experimental drugs.  There also is a compassionate drug program offered by the Pharmaceutical companies for those patients who are falling in a particular financial bracket.
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: My brother just diagnosed with cc

Patty and Marion, thank you for your ideas and your support.  I will definitely suggest to my brother that he look at the sites you mentioned.  My brother is just turning 62 and this disease came out of the BLUE! I will ask him the names of the cocktail drugs he's being given.  I live several hundred miles from him so preparing meals is not really an option.  Interestingly, he told me that his doctors told him to eat only organic vegetarian foods.  He seems mentally dazed and so emotionally pressed so I dont know how soon he'll feel up to research himself.  So, I'm hoping another family member can assist him with online fact gathering.  I've heard other camcer patients speak of "chemo brain" where they feel fuzzy mentally during treatments and that's where my brother seems to be now.

I've felt so isolated in my grief and sadness since his diagnosis.  THANK YOU for a forum of caring people who understand because they've walked this path before me.  With much gratitude for your insights, Lauren

Re: My brother just diagnosed with cc

Lauren,

The chemo brain could be something called hepatic encephalopathy. Take a look at these prior posts on this topic, the second one suggests lactulose as treatment for this condition:

http://www.cholangiocarcinoma.org/punbb … hp?id=1661

http://www.cholangiocarcinoma.org/punbb … php?id=806

http://www.cholangiocarcinoma.org/punbb … php?id=635

Patty

Re: My brother just diagnosed with cc

Lauren,

Never stop fighting this disease and never stop fighting the insurance companies.  I know from personal experience that you shouldn't take no for an answer.

Here is one of my favorite links on how to fight insurance.  Good luck to you and your brother!

Bill

http://www.patientpower.info/listenheal … 0Insurance

Re: My brother just diagnosed with cc

Wow, thank you so much for this feedback!  I've been sitting with the stinging grief of a "grim but not hopeless" diagnosis by myself.  I truly appreciate all your comments and I will follow up with your suggestions.  I've never participated with this type of support community and I feel so grateful for your encouragement.
Lauren