Re: Another Newbie

Dear Denise, on one hand I am sorry about the DX but on the other hand you can now began the fight and you know what has to be done. Like my Teddy used to say, "Now we know what's wrong, let's fix it!" Not sure about the Chemo Cocktail, every ONC has diff ideas and every patient reacts diff to diff chemo.  Sending you my best and hoping you get in to Mayo Tuesday! Keep up with your wonderful attitude as it will get you far.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Another Newbie

Denise....I agree with Lainy in that you now know what it is you are dealing with.  To me, this means that half the battle is won.  Denise, our Percy compiled a listing of chemo agents pertaining to this disease:
http://www.cholangiocarcinoma.org/punbb … hp?id=7843

Gemcitabine/Cisplatin has now become the standard regimen for cholangiocarcinoma followed by alternatives, but most are Gemcitabine based with an aded agent.

Have a safe trip back and please keep us posted.  We are in this together.
Hugs,
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: Another Newbie

Well, we met with the oncologist today, he says that because of where the tumor is he would only suggest the chemo right now for nine weeks and then see if the tumor shrinks, there is no metz that they can see, but the tumor is pushing  into the right side of the liver and that's why they can't operate, it has to move away from the right side so they can resect the left. 

We are trying to get to cancer treatment center of America, but they have not gotten approval from insurance yet....man that really ticked me off....I'm fighting for my life and your worried about freakin' insurance, are you kidding me????  Mayo wants to start chemo asap, but I really wanted to seek another opinion first, but don't want to delay treatment unnecessarily.  I have three kids, all teenagers, my 15 year old daughter lives full time with me and I had to tell her about the diagnosis, we cried and she and I and her stepdad had a nice evening joking around and trying to forget this stuff for a few minutes.  My other two kids are with their dad and I'm dreading telling them.  My oldest son had leukemia when he was 4,  so he is not going to take this well.  My youngest won't really get it, I hope to tell them in the next couple of days.  Any advise on that would be appreciated.

So, sorry I'm rambling, but now I'm considering Moffitt, since it is close to me, but I'm afraid that they will say the same thing that Mayo is saying and then we wasted precious time.  What do y'all think????

Re: Another Newbie

Denise,

My personal experience with my wife's ICC is, once the tumors get a stronghold in the liver, they grow at an alarming rate. I do support getting second opinions but know time is really of the essence. Also, my experience is both of the regional cancer centers we went for second opinions (Memorial Sloan and Fox Chase) supported the recommended treatment plan (Gem/Cis) as the first course of treatment.

Carl

Re: Another Newbie

Denise, I would try to get in to Moffitt ASAP, as CTCA does not do as much in CC treatment as some of these other Hospitals. And if Moffitt is close to you all the better. It is VERY important to be in a Center that treats it's fair share of CC patients. As for telling your kids since they are teenagers, tell them sooner than later. I would end that conversation with how they can help. They need to feel a part of it and that they are helping. Kids are more resilient that we give them credit for and better they know then start guessing things and wondering why the family is acting 'different'. Much good luck on getting in somewhere now for that 2nd opinion and please keep us posted!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.