Hi,
Yes, he will lost the appetite  and some weight and depression is common.
Most likely the  weight loss is here to stay ; ask the doctor to give your father antidepressant like Mirtazapine 15 or 30mg once a day. In addition to it's antidepressant pharmacological indication; one of it's side effect benefit is increase appetite and weight gain.
I am a patient and not a doctor,but I travel the same road your father is traveling. Depending on what your father really wants;reality is there are currently no effective treatment for this cancer. I prefer quality of life rather than quantity.but it is all up to your father. don't worry, my friend God will be with you and your family. Pray hard.

God bless.

2

(5 replies, posted in General Discussion)

Hi, Eli,
Hope everything turn out the best it can be for your family.
Hugs,

Percy.

Hi,
You need to give time for the surgical wound to be healed first.
If you are out of the States, most the clinical trials are off the table and may not be available. Do not waste time on searching.
NGS can be done on tissue block sample. I mentioned this test because you said you want to know the most up to date "ideas" for CC. But please remember, this are ideas and not treatment protocol. That means it's usefulness is not proven yet and most oncologists here in the States,do nor really know how to use it. Remember, this NGS test has coming out just a few years ago,most likely it was not in the textbook the oncologists study while in school.  I think your doctors estimate about your fathers situation should provide you a basic foundation in caring for your dad in the future.
University of Iran has experiences in treating cholangiocarcinoma ; I was in contact with a couple of  daughter and son. Who, like you, have the responsibility to care for their parent. Just contact with the GI department of the university to see what they can do for your father.
God bless.

Hi, Samira,

Just let you know that my message above to you is  specific to your situation and not generalization  if you read my answer carefully, I think I have provided the suggestion to your specific needs the best way I can base on your dad's  disease time frame and situation.
Your dad looks like have stage four Hilar cholangiocarcinoma  mets to peritoneal and liver.
Peritoneal mets is difficult to treat systemically ,not to mention about surgery if an option. And you are right that the survival rate is minimum  for patient who have mets to the peritoneal area
Normally if chemotherapy needs, it will be six to eight weeks after surgery.
You ask about "uptodate treatment option " and that is why I suggested next- generation gene sequencing test to you in order to take advantage of the tissue sample that your dad had after the recent operation.
Immunology treatment like TIL@NIH currently in clinical trial is still accepting patient if your dad qualified . Other like PD-1 and PD-L1 antibodies are in the works and may be ready in a couple years.
God bless.

5

(35 replies, posted in General Discussion)

Hi,Mary,

I understand completely how you feel.
This is an up and down roller coaster ride with no end in sight.
It is a day by day , mind over matter, a faith challenging event that leave you and I speechless,hopeless and wandering in the Sinai desert like Moses , at the most we can see the promised land but cannot enter it at this point in time.

Take good care of yourself, having this disease is really a challenge  .

God bless.

6

(35 replies, posted in General Discussion)

Hi, Carl,
Thanks for your offer for picking me up to go to see a Cubs game, especially you are living in PA. The Cubs is celebrating it's 100 years birthday this year with lots of  specials like you can eat different kinds of hot dogs for each different decades. I promise I will go with you to see the Cubs if they will be in the World Series . But I really appreciate your kindness. I know you are a doer and not a talker base on our communication over the time we have met.
You have  a strong desire to help the patients on this board and you would love to contribute your professional skill to help others. You are a practical person. Thanks, Carl .
God bless.

Hi,
Idon'think surgery will be an option due to the metastasis .
Gem/CIS will be used if it works till resistance occur. Other chemotherapy or targeted treatment will extend the quantity of life but not quality .
Ask the surgeon to help you to send tissue sample to Foundation One or Target Now or other labs for a " next- generation sequencing" gene profile to find out the gene mutations if any in preparation for any up-to-date treatment option in the future if cost is not a big concern.( about 3000 - 6000).

Immunology may be the answer for treating cholangiocarcinoma .
It is also not a bad idea to consider quality of life over quantity of life when time is come. Patient desire come first and should be respected.

I may not be able to answer questions in my normal way,so,  please look up of my previous entries to understand my ways of thought if needed.
God bless.

8

(35 replies, posted in General Discussion)

Hi, everyone,
Thanks for your concern about me.
I am fine, pain is controllable; sleep  more than I needed;lost sense of motivation
;hope is a rare commodity even at the end of the tunnel; don't want to let go but feel otherwise after 5 years of battle.
God bless.

9

(11 replies, posted in Members' Cafe)

Hi, Lainy,

I think  this discussion board should have like you said a section for
Miracle and Hope, but if I may, I would also like to have a section called
Medical information and Reality.
So for someone who just want to know the medical side of this cancer and reality.
It will save a lot of time.

BTW,thanks for all your concern about me including those who just emailed me privately . I appreciate.
God bless.

10

(35 replies, posted in General Discussion)

Hi, Lainy  and everyone,

Thanks Lainy for your message and thanks Marion to alert me for the message.
I am fine, but I feel I lost the purpose of life.
I have pain but manageable.  I spend most of my time in bed; appetite is not good but can eat solids. I really do not want to have hospice in fear of lost control of my freedom. 
I do want to send messages out on this board and answer questions, but afraid it may hurt people who are newcomers and full of hope.
My conclusion about this disease and treatment is it it a long way home from cure.
As a patient, I advocate let the patient desire what he or she wants and not to interfere even you think you know a lot about this disease.
Mentally this disease is very hard on patient. 2nd opinion is good but not always helpful.
God bless all of you.

Hi, Mcwgoat,

Please take good care of yourself, this is not a easy journey to travel but I will pray for you for a comfortable ride.

Thanks for always praying for me. I do not know how tough this journey will be until now.

God bless

Hi, everyone,
I went thru the chemotesting by Target NOW report, and the next Generation gene seauencing profile. I also saw the doctor at Mayo's Individualized Medicine Clinic .
My conclusion:    Target NOW  will list the drugs that patient will be more sensitive to and Foundation ONE report will report the gene mutations of the patient; but neither is of great benefits to patients who are suffering now.
In short, most oncologists do not pay attention to the reports now due to the fact that this are new technology  but few proven new drug to work with.

BTW, I feel a bit better, stop loss of weight, Megace helps to increase appetite, and I eat more now as compare a month ago. I use ibuprofen and cut the Oxycontin dose in half  for my back pain and use Miralax to help constipation. I sleep much better than a month ago (now I sleep almost 8hr/nite) with the pain pills and sleeping aid.Hot bath 2-3 times daily helps the pain; doctor visit every week  and he plans a PET scan in 3 month instead of 2month . I am sure I will ask for earlier PET to be done. Fatigue is a major problem since now the oncologist put me back on Xeloda 1gm twice a week every  5days out of 7 days to slow the growth of the tumor.
If I have more energy, I will look into TIL@NIH.

Thanks for those  who pray for me and I hope other patients will improve their conditions as well.
This is really not an easy journey to take.

God bless.

Hi, to everyone who wrote to me,
Thanks for your concern,
Lainy, thanks always care about me and my family. I will try to wait as long as possible not to open my chinese restaurent.
Gavin, thanks for your partnership in proving info here on the message bord.
Willow ,nice to meet you.
Randi, thanks for your concern about me.
Scott ,thanks for your suggestion.
Catherine, thanks for your message.
and if I forgot anyone, please forgive me.
It is a beautiful sunshine day today out there looking thru the window.
God bless all of you.

Percy.

Hi,
MASS GENERAL will have more clinical trials available.
J H is also very good too.
The main things is the desire of your mom wants to do treatment or not.
Side effects of treatment or clinical trials will affect the quality of life.
God bless.

Hi, everyone,

Just remember please DO NOT  use cryoablation for lymph node; in my case ,it contribute the spread of the tumor.

God bless you everyone.

Hi, everyone,

Thanks for your concern

God bless.

Hi, everyone,

I developed stomach pain,back muscle pain and therefore cannot sleep at night for more than a month after my last trip to Mayo clinics for RFA treatment.2/7/2014.
I do not think the RFA help either.I will have another appointment with Mayo in late April .
The recent PET scan shown disease progress and therefore the furure does not looks bright. I will have another PET in 4 weeks. I refuse GEM/cis or other IV chemotherapy or targeted treatment but I will accept the oral form of TKI.
Sorry not to inform all of you earlier.

All in all, I will choose quality of life over quantity of life,especially after last month's stomach pain,back muscle pain and sleepless nights;it is no fun at all.
I need hospice info, when can I start,what to expect,what kind of services that I can have? please inform.
Also info about setting up estate trust or anyone you can recommend for me ?
What else do I miss so far? please give your ideas. thanks

God bless all of you.

Hi,

How old is your dad?
How long has your dad been a diabetic? on kidney dialysis ever before?
Need to know size of the tumors-- how large in [cmxcm ] is the large one and how small is the smaller one?
Need to know the location of the tumors--Are both tumors are located on the same lobe of the liver (ie: both on the left or right side of the liver)?
Basically, the treatment plan from John Hopkins and Robert Packer are the same at this point in time for your dad. chemotherapy for 2 months and then scan for evaluation is a conservative but logical approach.
Until I know the size and the locations;then I may have some more ideas on the  Geisinger  liver partial liver resection (cut lg tumor, burn off sm), then chemo.suggestion for you.

he wants to have surgery is he means your dad wants to have surgery .(ie:as his first choice of treatment option.) ?
PET scan before surgery has had a 30% chance to  change the decision making of having surgery or not due to the PET scan has the ability to detect metastasis in other parts of the body.

BTW, I am only a patient of intrahepatic CCA for 58 months and I am not a doctor either.

God bless.

19

(15 replies, posted in In Remembrance)

Hi, Linda,

I am sorry for your loss, may the good memory of you and Terry last forever and  leave this horrible roller coaster ride fade away as soon as it can be.

God bless.

20

(3 replies, posted in General Discussion)

Hi, Carl,

I think this may be a time to consider chemoembolization (milder approach) or the radioembolization(segmental if possible as compare to whole liver) as your doctors suggested to you at the beginning of this journey last year.

Sloan is good,but mostly focus on chemotherapy or clinical trial such as HAI pump using FUDR . Phase II  clinical trial of it  shown  about 47% overall response rate if patient is ICCA  unresectable.(ie: pop=26 ) ;small population of patient and the associated risk(surgery is of my concern).BTW,I do not think ,unless you  specially ask for a multidisciplinary approach that involved an interventional radiologist (IR).Sloan will start the process as such.-Sloan's view is that radioembo/TACE is hard to draw specific conclusion but my be of benefits for subset of patient due to series of retrospective experiences with small numbers and varied post-intervention approaches there.

Mass General Hospital upon requesting for a GI consult  specialized in CCA,He/she acts more like a coordinator to coordinate  you to see all the specialty doctors and made the final recommendation from the multidisciplinary team.(liver surgeon,medical oncology, medical radiology and IR )
MGH will most likely you can get a  more cohesive prognosis about your wife and treatments.( and I think they automatic request for tissue for NSG gene profile.)
One advantage of MGH is that  they have the largest hospital research lab in the east coast base on what Dr. ZHU (the leading researcher) at 2013 CanLiv seminar at Washington DC.And they do have more clinical trials to match Next Generation Sequence(NGS)genomic profile result . May be they can suggest a targeted agent or clinical trial for your wife. But don't get the hope too high, for me I have 4 mutations but I may qualify for one or two; other patients on this board even cannot find a match for a clinical trial.
Clinical trial is the recommendation from NCCN as well as the  respected oncologist like Dr. Eileen O'Reilly at Sloan.

John Hopkins is also a very good place to have consult, just make sure you start with a GI specialist and tell her/him what other doctors your want to be seen.
Most of the time, I meet them at the conferences that this foundation sent me to sit in for information. The one that I went to for 2nd opinion and treatment is Mayo Clinics. they are very professional and answer questions in their field of specialty with great knowledge. my GI consultant is Dr. Roberts,gentle and kind.A very organized place for a 1800 bed international clinic(was told by a nurse).;it's nursing care is unmatched in staff to patient ratio.(ie: vital sign every hour , and they did come almost exactly an hour to check my vital. if question asked and they don't know, they will call their resident doctor to adjust my Fentanyl  PCA in the middle of the nite.

God luck , Carl and

God bless.

Hi,everyone,

http://medicalxpress.com/news/2014-02-e … -bile.html

the above is about EGFR , FGFR mutation .

http://www.sacbee.com/2014/02/14/615795 … -2014.html

The P53 tumor suppressor gene is in about 50% of cholangiocarcinoma patient, it is like the brake system in a car, if it functions  normally, the car(the tumor) can be  stopped as desired. but with P53  gene malfunction,the car( tumor) cannot  be stopped and therefore the tumor keep on growing.

God bless.

Hi, Gavin,
It make sense, during the recent trip to Mayo for RFA, the liver surgeon said one thing to me, do not worry too much about the mets to the celiac trunk it is small;
the most important thing to prolong your life is take cake of your liver first at this point, keep it functional as normal as possible.

So I agree there is a need to change the staging system to like T1N1M1 is different than T4N1M1 instead of all lump into T4N1M1 one category.

Thanks Gavin,be sure to say hi to your mum for me.

God bless.

Hi, everyone,

Thanks to Gavin, this may be one of those clinical trial that can be of benefits to CCA patients especially if you have done the Target Now or Foundation One NGS genomics profile already; if you have amplification ,over-expressions or actual mutations. it seems base on the criteria, the restriction are minimalto join.
Regorafenib isa FDA approved for other cancer but can be "off label use" for other solid tumor; its basic dose and side effects are mostly known.

Godd job, Gavin, BTW, please say hi to your mum for me, boy, is it a memorable winter here in the States or what"?

God bless.

24

(11 replies, posted in Members' Cafe)

Hi, everyone,

I thank all of you who always pray for me especially in hard times like the last couple weeks going Thru RFA for the 3rd recurrence of ICCA. I can feel it in my heart.
As my body getting older, everything was a bit more tough,walking a bit slowly , and try to do what I could during the previous RFA treatment but my body just say no. But overall, my son helps me a lot, calling the nurse, listening MD instruction and drove me home. He is a good son.
I also can feel the energy of the hugs that members give it to me personally or just in writing in the dark hours at nite in the hospital. thanks to you all.

THe treatments time frame could not be better,from the discovery of a 2 cmx2 lesions in the liver in June' 2013 for the 1st RFA procedure  and got   A 2nd opinion at Mayo Clinic and be retreated  by the  2nd RFA in early Feb.4  for the same tumors was not by coincidence but by the Grace of God and the love that all of you  all show for me. For this I am very grateful.
But as all of you may know, fighting CCA is a long journey and not for the faint hearted. If you accept this idea, keep a big eye on the patients  for any change, take a grain of salt of what all doctors said ,when in doubt, seek the best opinion from doctor who specialized in CCA for further guidance ; combining use of your knowledge and the doctor opinions  to make the best inform decision with no regret.

Again,thanks for all who care and pray for me.

God bless.

25

(22 replies, posted in Introductions!)

Hi,  Julie,

Please check the link below for my medical history.

http://www.cholangiocarcinoma.org/punbb … 800#p76800


God bless.