Topic: Is delaying chemo the right approach?

Now that it has been confirmed my wife has ICC, I find myself in a dilemma. I could use your advice that I am approaching this the correct way.

How quickly do we start chemo?

We had our official Oncologist meeting 2 days ago where he confirmed the initial diagnosis of ICC. However, we knew this was the initial diagnosis a week ago. As soon as we had the initial diagnosis, I - with a lot of help from some incredible people - began the task of getting appointments at some well known, well respected cancer centers for consult visits. I also researched and, again with the help of others, found some potential trials.

Everything I've been told and most of what I've read encouraged getting second opinions. And also to delay the start of treatment until you are sure of the best plan. I am happy to say, I've made great progress (getting all the paperwork done, all materials faxed or mailed, talking to doctors, nurses, aides) and we now have three scheduled visits over the next 8 days.

My dilemma is our local Oncologist put fear into the both of us by saying emphatically "you really need to get started on chemo". My wife is feeling the urge to start tomorrow. Her situation is several masses in the liver and affected lymph nodes. I want to make sure the consults confirm the best treatment plan before beginning. But I don't have the cancer. It's much easier for me to take that approach.

Thanks for your comments.

Re: Is delaying chemo the right approach?

Sorry. The consults are scheduled beginning Monday, Apr 29 and span 8 days. Slightly different than my first post.

Re: Is delaying chemo the right approach?

Welcome and like all have said sorry you had to find us. I am a CC survivor thanks to a liver transplant. I like most of us, was not sick just itchy and the diagnose was the most thre ridiculous thing I heard. I was very fortunate that by a series of "miracles" (or mistakes!) I was diagnosed by one of the top doctors in this field and was immediately put in the care of another top doctor, Dr. William Chapman at Barnes-Jewish Hospital, St. Louis MO. I have the most amazing story to share please read it at www.catherinedunnagan.com there is HOPE. I will be 4 years cancer free May 24, 2013.
I was diagnosed July 31, 2008 and didn't start my chemo till the first week of September. I had to have a staging surgery, a port put in, be marked for radiation and several other appointments and procedures before chemo could start.
Please feel free to contact me if you would like to talk or if there is anything I can do (618-567-3247).
Lots of prayers and HOPE-Cathy

4 (edited by PCL1029 Thu, 25 Apr 2013 14:48:49)

Re: Is delaying chemo the right approach?

Hi,
Since you have already lined up the three appointments ,I will wait after the 8 days consultation and make the final decision. I personally do not think the two week delay will affect the outcome that much.IF the consult provides you another option than starting chemotherapy,then it may complicate your situation if your wife has alreadybeen on chemotherapy.
As you know, the only possible cure is surgery. If surgery is not possible,then radiation or medical oncology consult should follow.

Have you made  the surgical consult yet; since you are in new york;If i were you ,i will made another visit to Dr. Kato At Columbus/Pres. Hospital, he , by far is the liver surgeon  that I know most likely to find new ways to allow  the most difficult patient to have a chance for the possible cure.
If you wife has ICCA but just have lymph nodes involvement without metastasis to other parts of the body;unless there are tumors in all three lobes of the liver and spread allover the places ;otherwise, if the tumors are focally located in different lobes; I think it is worth for a  Dr. Kato surgical consult before both the radiology and oncology consult.
Again, i speak as a patient only and not as any medical professional expert.


God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Is delaying chemo the right approach?

I'm just a patient, not a doctor, but I can tell you that the mot likely scenario is that all consults will say the same thing - - get started on a chemo regimen, and the front line, the first choice one is the combo cisplatin/gemcitibine. It is maddening to wait and you will all relax once chemo is started because your fright will quickly turn to fight. It always happens, you will feel energized. I had to wait two weeks after diagnosis because of my particular cancer being a hybrid and they wanted more and more pathology reports and stains, so it was the docs saying wait - - it about drove me crazy. That's just my experience. I doubt there would be any other course of action proposed first, but there might be different combinations of chemo proposed and you might want to take the time to learn about that first. Also there are different opinions on dosing levels. Otherwise, I'd get going.