Mother with CC
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Charlie…I agree with the others in that a second opinion (or more) is in order. What is troubling though is your mention of the confusion your Mum is experiencing. Is it due to the medication given or does she have high ammonia levels? I would have another discussion with her treating physician.
All my best wishes,
MarionHi,
I am also a patient of CC.
If i may ask,how old is your mother? How is her current health status(other health issues besides CC)?These are risk factors in determining treatment plans.
Based on your info,the CC have metastasized to the intestine and therefore surgery is no longer an option.
When she had confusion,did she on pain medications like Norco because of the bile drain(stent)?
You mentioned your mother was on Gemzar and responded well with the treatment;did she just received Gemzar alone as mono therapy or Gemzar plus other chemo agents?Second opinions on Oncology consultation and interventional radiology consultation are needed in your case to provide your mom more treatment options since there are still other chemo agents and radiological interventions that can be used to control or even shrink the CC for your mom if they are not contraindicated to your mom’s case. I agree with Lainy for the hospitals she mentioned which are specialized in CC.
God bless.Hi Charlie, welcome to our wonderful family, sorry you had to join us. I just emailed Sheri from her note to me, so will not repeat all of that part. We are huge believers in other opinions. I would gather all her tests and submit them to Mayo Clinic or MD Anderson or Barnes Jewish Hospital in St. Louis and see what they have to say. That is a lot of surgery your mother has been through she is quite a brave warrior. You have come to the right place and I look forward to hearing back from Sheri. Be strong and I wish you all the best.
Hi Charlie,
Welcome to the site. Sorry that you had to find us all and I’m sorry alos to hear about your mum. But I am glad that you have joined us all as you have come to the right place for a load of support and help. And also, feel free to ask any questions that you have and we will do what we can to help in answering them. We are not doctors but we’ll do our best to help.
Can you please give us some more information on your mum. Where was she diagnosed and operated on? And how old is she? Your mum has been through a lot lately and how does she feel about seeking a second opinion for further treatment or surgery? A second or even a third opinion is an option and I am sure that other members will be along soon to offer their thoughts on this. In the meantime, should your mum wish to seek a second opinion here are some links that may be of use to you.
This is a list of major treatment centres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
And this is a list of doctors and treatment centres created by the members here –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
I know what you mean about struggling with the fact that they are not going to try something else, I went through that with my dad as well. One thing I would say though is that the decison to get or not get a further opinion should be your mums. I went through this with my dad and he chose not to get another opinion and I fully supported him in his decision.
I hope that you will keep coming here and let us know how your mum is doing. We know what you are going through right now and we care.
My best wishes to you and your mum,
Gavin
Hi Charlie, Welcome aboard. The jury still seems to be out on whether chemo helps stage 4 but you will find people on here that it has helped, my husband being one. Doug is 60 and was very fit and active before cancer. He was diagnosed with adenocarcinoma last October, then cc in December. He was offered palliative chemo and was told only 10 – 20% respond and it was not a cure just an extension of life. We chose the chemo and Doug had 8 rounds (16 sessions ) from December until the end of May. The chemo combination was gemcitabine (Gemzar) and cisplatin (very common choice for cc). He also had radiation to the worst bone mets last October. He has been progression free since February, so we are regarding this a success. He also takes naturopathic support. Just telling you all this to let you know there are people with success at stage 4 and not sure why they are not offering you a choice for treatment. And as you said she responded well to the Gemzar. So, yes I would say a second opinion is in order.
Oh, just wanted to say that mental confusion is often caused by high ammonia levels. This can be tested by a blood test and lactulose is often prescribed to help bring the levels down. Doug has also suffered from mental confusion on and off. Right now it is good
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How does your mom feel about all this? Is she willing to get more treatment?
Let us know how you make out. Sending best wishes to you and your mom. NancyHi everybody, I’m new to the board. I was looking for some input. My mother was diagnosed with cc back in Nov 2010. Cancer was confined to bile duct so surgeon went in to remove tumor in Jan 2011 and found cancer in the liver….so he closed her back up.
She underwent round of Gemzar and responded well, so doc went in again….got the tumor rebuilt her bile ducts but found a little cancer behind the small intestine. That surgery was June 6th 2011. She has struggled a bit with recovery and had to have a drain put in etc. Some mental confusion, etc that would come and go.She recently had another scan Aug 10th and it shows that cancer is back in liver and in the small intestine/bowel. Oncologist sent them home saying chemo won’t do any good….call hospice basically.
I’m struggling with the fact that they aren’t going to at least try something else….
Any input would be greatly appreciated. Second opinion in order?
thanks
Charlie
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