Topic: Intro & Advice Needed

Posting this on behalf on my father (64 at the time) who was diangosed with CC in July last year after suffering from jaundice and severe itching which I'm sure you're all familiar with. Subsequent scans showned a tumour in the lower 1//4 of the bile duct and Whipple Procedure was recommended and conducted in late July last year.

Recovery from the surgery was difficult initially, however he now suffers from no ill effects or complications (diet has remained exactly the same).

Post surgery we learnt that the 6cm tumour hadn't spread to any other organs and was contained within the bile duct (also no lymph nodes showed any involvement with which we are fortunate). We were presented with the option of continuing without any treatment or running a course of chemo (which I'm fairly certain was Gemza). For more peace of mind that anything else we decided to proceed with the treatment.

The treatment proceeded well; however in the second last week of treatment he's CA19 markers had increased to around 70 and then the proceeding week up to 100 which prompted his oncologist to order an urgent CT Scan.

The subsequent scan was clear and we were told to run another set of bloods in 6 weeks, which we have just recently completed and again there has been an elevation in his CA19 markers (up to around 200 I believe). Advice moving forward from here has been that he appears to have microscopic cancer cells present and that we should sit back and wait until it presents itself before looking into further treatment (further tests and scans scheduled in July).

This doesn't really sit well with me, as I'd assume there could be something done in the meantime to try and negate what's happening... Surely sitting back and waiting can't be the best option?

Other than that Dad feels fine and doesn't have any issues at all.... all other blood results with the exception of his CA19 are perfect.

Personally, I'd like to get a second opinion on the best way of proceeding from here, if more for our own peace of mind than anything else.

Does anybody know if there are any dietary adjustments that could be made in order to potentially help?

We're based in Australia and being a fairly rare condition there doesn't seem to be too much information available or that many oncologists that would specialise in this area.

Re: Intro & Advice Needed

Dear APK welcome to our remarkable family, you have come to the right place. Sorry to read about your Dad and it really sounds simiiar to what my Husband,Teddy went through 7 years ago. He had a Whipple with clear margins although 5 ONCS/Docs would not do chemo. CC returned after 3 years to where his Duodenum used to be. He had Cyber Knife and that bought him another 2 years. It is true that sometimes the count can go up but it takes a little longer for something to show up and they cannot recommend treatment with nothing to see. I do think a 2nd opinion is called for, it can't hurt anything and then you will never be second guessing or on the other hand may find a better treatment plan. We are big believers in 2nd and 3rd opinions. Some patients feel strongly about changing their diets however, there has never really been any proof that they keep the CC at bay. A good team and a good attitude work wonders. I believe in letting the  CC patient eat what they want as they really need their energy to fight what is going on in their body. We have heard before that there are not to many ONC in Australia who specialize in CC. All the more reason to get that next opinion sooner than later. Wishing your Dad the very best, you be very strong and please let us know how things are progressing as we truy care.

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: Intro & Advice Needed

Hi APK,

Welcome to this great site, but sorry you had to find it.  My mother was diagnosed with CC in July 2012.  We are based in Melbourne as well and being treated at the Epworth.

Mum had a whipple procedure done in July.  Cancer had not spread to other organs but there was lymph node involvement.  She was staged as iib.  She was on 5fu and radiation for 6 weeks.  Unfortunately, the cancer returned and she was immediately put on gem/cis.  She did not tolerate this very well.  She had contracted every super bug known to man. We had to give her a break for a couple of months.  She had a CT in January with remarkable results.  No signs of cancer. Unfortunately, she had another scan a week ago and there are signs of swelling on the liver.  I don't know how, but the oncologist is sure it is the cancer spreading.  She is now on Gemzar for 5 weeks.

I wish I could provide you with more useful information, but don't know how to.

Anyway, please email me if you like to meet up and discuss.

Take care
Ilias

P.S.  where is your father being treated and who is your oncologist?

Re: Intro & Advice Needed

Dear Ilias, I just knew you would come through for APK. We don't always have to have the answers, we are not Doctors but the mental support is just as important and here you are, thank you. I so hope you can get together amd meet as there is no better feeling in the world than to meet one of our Members. I hope there is something they can come up with to  help your Mother and  am sending her my best.

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.

5 (edited by PCL1029 Sun, 17 Mar 2013 14:32:47)

Re: Intro & Advice Needed

Hi,
No body wants to wait 4 months or so for treatment. Cancer cells divide and multiply at a rate of doubling its size every 3-4 month in general ; Most CCA are of the  slow growing kind, some are faster and some are slower.
My personal experience was ICCA grew from nothing to a size of 2.5x3x3.5cm in about 10-12 months on my second resection of the liver. But I saw other member on the board that his/her ICCA grew about 2cm each in two dimensional description(ie: from 11x12cm to 13x14cm ) in just 2-3months time. ECCA are in general smaller in size, more lymphatic and perineural involvement as compare to ICCA.
Ca19-9>129 is indicative of  cholangiocarcinoma (CCA) if not definite.
Oral capecitabine may be of value if Gemzar don't work.

I am only a patient and by no means have the expertise of a medical doctor.And of course the health system is different from the States and your country,therefore it may have difficulty to get capecitabine approval for such use by your oncologist in Australia without tumor appearance.
In the mean time, you can try Oncozac, an immunomoderator  without prescription ( get info. from the internet )to boost the immunity of your father's immune system.
I hope the above info helps.
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: Intro & Advice Needed

Hi Apk,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your dad is going through. But you have come to the right place for support and help so I am glad that you have joined us all. I too know the jaundice and terrible itching that your dad experienced as that is far too common and my dad had went through that as well before his stent cleared that up.

I too would be looking to get your dad a second opinion if you could from someone who is very experienced in treating this kind of cancer. Being from Scotland though I can not offer any insight as to where to go to seek a second opinion. Hopefully others will also be able to join Ilias in offering some further thoughts on where to go.

As to nutrition, we do have an excellent nutrition board that may be of use and interest to you and it can be found here -

http://www.cholangiocarcinoma.org/punbb … .php?id=12

I hope that you will keep coming back here Apk. Feel free to ask any questions and we'll do our best to help if we can. Please keep us updated on how things go for your dad and know that we are here for you.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Intro & Advice Needed

Hi Apk,

I just wanted to welcome you to this site and say that I am sorry your Dad has CC. I am happy he was able to have surgery, but I know it is very hard to always worry about what is around the corner. I would definitely feel the same way in that I would want a treatment to start right away as well. I would push for more to happen now, but if there is nothing to see, how do they know what to do? I guess I would want scans sooner than July for sure. I think you are in a difficult place and I hope and pray for the best.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Intro & Advice Needed

Apk,

Welcome to the site and so sorry you had a reason to find us.  But you have definitely come to the right place.

I definitely can see your dilemma, so I guess my advice would be like others have said, get a second opinion. We are firm believers in second and even third opinions.  Even if it ends up being the same as what is currently being recommended, it will help you feel as if you aren't just sitting and waiting for the other shoe to drop.

I wish you, your father and your family the best.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Intro & Advice Needed

Thank you for all the responses and well wishes.


We had a meeting with the surgeon who performed dads whipper, and he was a bit disappointed that he's levels hadn't come down given the success of the initial surgery and subsequent pathology. He too is of the agreeance that we need to wait and see what happens over the coming months.