1 (edited by sabby015 Thu, 15 Aug 2013 02:42:07)

Topic: Need Suggestions

Dear All

hi I am new here & know little about Cholangiocarcinoma based on my internet search.

My Mom is diagnosed with CC on 6 July 2013. Initially it was jaundice & was not healing with treatment, instead she lost wait. Doc proscribed CT &  later we found it is CC. Soon after she had surgery on 12 July 2013. Before & after Surgery there is no pain anywhere in stomach. After surgery  rashes & fever is gone. She is recovering, health is better then before & she is eating willingly.

Now after op reports say different story, earlier we were informed it is first stage of cc but now with the new after op report doc said it is second stage.
(can anyone explain me about stages & there effects)

we asked the doc about after surgery diet can given to get strength but the team said she can eat anything as long as she can digest. She is eating normally & no digestion problems.

Doctor recommended  "chemo & radio"  sad . but I know her body is not that healthy to tolerate chemo & radio together. I have seen chemo effects in hospital & i don't want my mother to go through that pains.

I need to know nutrition & supplements names which can be given to regain the strength before, during & after chemo.

is there anyway to avoid chemo?

Thanks

2 (edited by PCL1029 Thu, 15 Aug 2013 10:29:42)

Re: Need Suggestions

Hi,
About different stages,

http://www.cholangiocarcinoma.org/staging.htm

As you will learn later, the most important is the location of the tumor in future Tx . When recurrence will come around.( 50-75%)
Nutrition and supplements are not of value in PROVEN benefits .that is why doc said whatever she can it,but avoid fat and eat more protein(ie; soy) may be of benefit.
Listen to your doctor for chemo and radiation is a very appropriated suggestion.
I am a patient and know  much about this disease within the last four years only.

One final word, do your research before you take action since internet information (including this web site) are used by the public and not every suggestion by the public is of any true benefit.
As a rule of thumb, for this disease, there is no quick fix keep up to date in knowledge about this disease in surgery,interventional radiology and medical oncology development is important. Every CCA patient is different even they are belonging to  the same intrahepatic or extrahepatic group. or even for the same patient in different recurrences;that is just my way of thinking about this CCA disease and not a proven medical fact.
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: Need Suggestions

Dear Sabby, I am so sorry to hear what your Mom has been through but it sounds like she is making a nice recovery. What kind of surgery did she have?
My husband had a Whipple and the recovery takes a lot of patience as it is a slow recovery from this surgery. I, myself have never seen proof of any miraculous recoveries or stories from a nutrition stand point. I feel if nutrition was a key factor Doctors would recommend it. I feel the best thing is nutritional drinks but not sure what kind you have there. Also I believe people are more aware of what they are eating today so a diet using common sense would be good. Like, no fried foods, fatty foods, lots of sugar would not be good to anyone.
My husband had no chemo after surgery as 8 years ago they did not do it so much if there were clear margins. His CC returned 3 years later where the Duodenum used to be and he had radiation then Cyber Knife. It returned to same place 2 years after that. May I ask what age your Mom is?
Best of luck and hope Mom continues on her good recovery!

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: Need Suggestions

I have seen that eating a diet that will keep you blood in an alkaline state will starve cancer cells. Cancer feeds off of sugar. If you send me your email I will send you a PDF book and you can see exactly what I am talking about. DO NOT THINK FOR 1 SECOND that doctors study anything homeopathic because most don't! One of my best friends is living proof that watching your diet can keep the cancer at rest. Now will it work for everyone?? Does chemo???? Why not do both???

5 (edited by sabby015 Sun, 18 Aug 2013 01:29:19)

Re: Need Suggestions

Thanks everyone

Sorry for replying late, i was travelling a lot now days.

PCL1029, Thanks for the link  & info, if you dont mind can i inbox you few thing.

Lainy.. Thanks for the support., My mother she is 65, weight almost 50-55 kg. I know how hard to see suffering your love ones. Please suggest any nutritional drinks, I will make them available. I have relatives in all over the places.

Daisy, thanks for sharing such valuable info. It is my huble request pls forward me the book or book name. my email id is sabby015@yahoo.com (request to admin please dont remove id)


we are going for chemo & radio starting from 21 august  or 1st of sept.

here is a part of the after op report. if anyone find matching it to their report. it has another page i will upload both if required.


SPECIMEN
-------------

PANCREATICODUODENECTOMY (WHIPPLE'S RESECTION)


DIAGNOSIS:
---------------
* PANCREATICODUODENECTOMY (WHIPPLE'S RESECTION), MODERATELY DIFFERENTIATED ADENOCARC OF HEAD OF PANCREAS.

* INVASION INTO DUODENUM SEEN UPTO MUSCULARIS PROPRIA SEEN.

* LYMPHVASCULAR / PERINEURAL INVASION IS NOT SEEN

* SURGICAL RESECTION MARGINS ARE  FREE OF TUMOR

* GALL BLADDER IS FREE OF TUMOR

LYMPHNODES:

A) THREE OUT OF 7 REGIONAL NODES RECOVERED SHOW DEPOSITS
B) ONE OUT OF 8 AORTOCAVAL NODES RECOVERED SHOW DEPOSITS
C) ALL SIX HEPATIC NODES ARE FREE OF TUMOR

TNM (AJCC 7TH EDIDTION,2010) T3 N1 Mx

Thanks
Sabby

Re: Need Suggestions

Sabby, looks like your Mother had almost the same surgery my husband did but he had clean margins, no lymph involvement and no chemo after. That was 8 years ago and they didn't do the chemo if all was clear. The nutrition drink Teddy liked best was Carnation Instant Breakfast and it can be had in place of a meal as it has all the nutrients one needs. I would blend in a banana and the one he liked was Vanilla. Another drink is Boost, not sure if you have either one but good luck. Also it is hard after a Whipple to eat big meals so a good idea is to let her 'graze' on food all day rather than eat a big meal. Best of luck with the chemo/rad and please keep us updated on her progress.

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.