Hi, Willow,

Sorry for the loss.  With deep sympathy,hoping everything will go your way and  protect the little guy and your family.
God bless.

2

(22 replies, posted in Introductions!)

I personally think, if I am not a patient now, there is no need to do the gene testing yet,; down the road, say 5-10 years, there will be a more complete set of testing tools for cancer in general will be inexpensive and widely be  available.
God bless.

3

(53 replies, posted in Members' Cafe)

Hi, everyone,

This may not be the last message I will write to all of you, but just in case, thanks for all your concern about me over the past 5 years.
It is not a journey that I want to travel, but when asked to travel on it, I have to accept without argument.
From my point of view, the cure  is still a long way to come base on current research development.,
As patients who currently have this cancer, we are the pioneers of finding the cure but not the recipient  of  the fruitful outcome. Knowing that, most if not all about the current treatments are palliative in nature . The lucky few are the 5% or so who have the chance of  complete removal the tumor with surgery.
The most important prognostic factor is the location of  each of the tumor occurrence  as far as my experience is concern.it dictates the treatment plans and therefore the outcome of the progress of this disease. When it metastasize outside the  organ, most likely it will be too late for cure under most  current  treatment plans.
Good luck to all and
God bless.

4

(22 replies, posted in Introductions!)

Hi,
I am glad that you think about the next generation gene sequencing(NGS) so important and useful. I think the same way too in the long run but for PRACTICAL purpose, it is not at least for the next few years as far as my understanding on this subject for the last few years is concerned. Again the key word is practical and effective treatment,not just any treatment.

The way you state how to get FDA approval meds for treatment other than the approval intent indication is call " off - label use"  is correct., but to get paid by insurance is another story.  Patient can also request FDA to approve investigational meds which is not approved  in the United States but  in Europe for humanitarian use.
Patient can also write to the drug company  to join its clinical trial  on studies they are conducting now. To increase the chances for trying new meds.
Yes, most of the time,Foundation One will write off the expenses and you are correct on that.
I do not agree with your oncologist's assumption on the usefulness of  treatments using NGS that effective  treatment is available NOW, but if just means treatment of any kind ,I will agree with that. With regard to using biologicals like the TKI,Monoclonal antibodies, your oncologist is right.
It is the limitation of the usefulness of the NGS rather than other reasons that  dictate what I think. Nothing relate to get 2nd or 3rd opinions.
I do have faith in using genetic profile for treating cancer,  the timing is  just not now though.

I went through the NGS Foundation One report and discuss the result with several oncologists whose names are very familiar with the members of this board and  that is how it sums up my current opinion  on  genetic profiling  about cancer in general,

I am a patient of this disease for  5 years,  I do not want to give other patients and caregivers false hope on this subject and this is the main reason I response to  the above message.

BTW,  to keep fighting is a relative term. Nobody would like to give up on his/her life, but if you are the patient, it is difficult to tell your love ones to do otherwise.

God bless.

Hi,
CCA is a cancer that there is no end to it in general. It is really llittle if any  good chance to cure it unless further research can provide such in the future.
There is also no standard  first line or second line chemotherapy  for CCA. Whatever it works the oncologists will used it . It is also extremely difficult if not possible to just look at biopsy slide to determine what choice fo chemotherapy is best for next treatment. Therefore be aware of comments that most of the medical professional had made. It is easier for them to say this or that works. Chemotherapy for CCA now to to best I know is like " try the most popular one that will work first and if not then try other regimens till one works. There are no consequence  for the medical professionals to have if all the chemotherapies do not work or fail. They are no refunds or even exchange. No treatment is another option in treating cancer general.
God bless.

Hi,   Jason,

Sorry to hear the findings about your wife.
The rate of the tumor growing   (1 and 2.5 cm) in  the last 2 and half months seems relatively fast to me which similar to mine. The good news  is that there were no mets outside the liver,
While I was at Mayo last Feb., I asked the oncologist about the liver function and the metastatic  growth in the lymph nodes, which one should I worry the most?
He told me that the most important thing is to keep the liver function as normal as it can be,the mets are secondary .  So I guest it can apply to everyone who have this  cholangiocarcinoma.
Since your wife had IMRT done, what is the Stanford interventional  radiologist says about the use of radioembolization at this point  ? Can it be done?
God bless.

7

(22 replies, posted in Introductions!)

If I remembered correctly,The BINGO TRIAL was done several years ago to find out the efficacy of the chemotherapy GEMOX,  vs GEMOX with Erbitux.  The final findings indicated  no great difference. Between the two protocols. I actually met him when he reported the final findings at ASCO2013 in Chicago last year.
By the way, there are few ,if any ,clinical trials that are currently  available for the next generation gene sequencing  reports like the Foundation One 250 gene reports. My opinion is that, it is nice to have the report, but it is still years away for the practical use of the report.So the benefit of such reports are secondary . You do not have to have it done if cost a lot or tissue is not available.

God bless.

8

(22 replies, posted in Introductions!)

Adding the EGFR inhibitor cetuximab (Erbitux) to standard-of-care chemotherapy for advanced biliary cancer failed to improve patient survival, according to a study published online May 20 in the Lancet Oncology.

Also during the Q & A section  at ASCO 2014 in June at Chicago, a doctor who does EGFR mutation research a lot indicated the severity of the RASH response
may not correspond to the effectiveness of the EGFR inhibitor agents.

God bless.

9

(2 replies, posted in Members' Cafe)

Hi, everyone,

I learn today that clinical trial (  such as phase 1,2 and 3 criteria  etc.) was established in 1954. Wow, a kind of old standard,is it?
And as you all know,staring a couple years ago, ASCO promote the use  of genomics as the standard starting point  for oncology research . So how can we incorporate this new concept  into the 1954 clinical trial old standard?
Are classic phase 1 or even  early phase 2 trials obsolete?
In the current new drug development whereby molecular and efficacy profiles of the new drugs are  much more accurate ( 50-70%) and well known before drug companies even select that chemical entity as a potential drug for new drug development. therefore is it necessary to have a large number of patients in a clinical trial rather than fewer patients. This is a challenge in patient selection in early phase clinical trial and will subject much less volunteers to harmful side effects.
God bless

10

(7 replies, posted in Introductions!)

Hi, Frippislander,

I am 64, have this CCA for more than 61months. I am doing the minimum in just hoping to slow down the tumor progress and metastasis . Personally I believe a better treatment plan will not be available within the next several years unless immunotherapy such as TIL@NIH( I called them and they told me I have to exhausted the available chemotherapy( ie: Gem/CIS ) first, and the disease is in progress before they will consider my request and there are a lot of inquiry since the success of treating the CCA for one of our members there. In short, they are very busy.
I know Mayo is one of the best place to go for treatment . I went there had all the oncology( general and personalized),hepatopathology GI consult and
radiology(interventional and oncology) consults. I came down with the ideas that Mayo is good but lack of coordination between different practices and therefore a a good  and special or personalized  follow up plan is some what difficult  for the general public. Gem/CIS was what they recommended , no personalized or clinical trial was available as of Feb.2014. I do not want to do GEM/CIS, so my local oncologist put me on Xeloda. Next scan will know whether it works or not.
I enjoy my life, kids grown, no more liability, happy to wait for whatever God ' s grace lies ahead.  I guess I am in the same boat as yours may be . Good luck and
God bless.

Hi,
U of Chicago charged me around 1400.00 to have a medical oncology consult which my insurance had paid for.
In short, there are no free lunch even if you know the doctor yourself. They have to make a living . It make no difference if you are a patient or caregiver.
Most of the free consultations I got eventually leads me to an office/ institution visit down the road even I met the doctors  several times in the last several years and they knew me.
The only free consultations I got was from my peers at work in a hospital settings.
God bless.

Hi, everyone,
Since the foundation is so kind to provide  this dinner for all of us, I want to mention one more thing to those who live in the Chicagoland area, like Darien,Naperville ,Schaumburg, North Indiana, Oak park, Aurora Elgin etc.
Especially if you have just newly discovered us and want to know us more.
We are indeed a unique group of devoted volunteers to fight for the cure of this disease. Like Jason said, the next five year will be the period that great success  will come.
As a patient , I hope I can meet all of you and answer your questions if you do not mind my accent.
God bless all of you.

Hi, Lainy,

Happy Mother ' s Day.

Miss you.
God bless.

Hi, Gavin,

Well done, I am sure this is the TIL@NIH patient ,one of our CCF member, that is so famous now.

Gavin, you never disappoint ed.

Say hi to your mum for me, 85F in Chicago, grass is growing,birds are singing, Blackhawks  is winning, Indy car  is racing( watch one of the best  race yesterday).
Coping with new normal,like babysit constipation( a 20min job ), try to keep warm( take hot bath or use heat pad),try to fight of fatigue;(easy said than done),manage pain every four hour( relatively easy), move around more often,find ways to increase my poor appetite here and there( difficult), try to stop talking or thinking to much about the future( very difficult),
Again, thanks Gavin for your devotion .
God bless.

15

(5 replies, posted in Thought for the Day)

Hi, everyone,

Happy Mother's Day to you all, ladies.

Stable is the word for me on my last scan but it is not sure in the upper or lower end of the 25% of the scale. Therefore will get a new one in six week.

BTW, GOOD quality of life is hard to come by ; have to accept a new standard of so called " quality of life"  which I never think about it.

See you all on May 31st. ,

God bless.

16

(3 replies, posted in Introductions!)

Hi, Peter,
it is the oral form of 5FU,on par in effectiveness(20-23%) with gemcitabline for cholangiocarcinoma(CCA) with or without cisplatin combination. it is somehow ,for unknown reasons, works better in extrahepatic CCA than intrahepatic CCA.
side effects are minimum.
depends on what your doctor thinks the dose can be higher(ie: 1500-2000mg twice a day[2weeks on and one week off] or 1000mg twice a day 5days on,2days off).
Xeloda ,if it works, can reduce the size of the CCA or slow the growth of the tumor to buy time and have some quality of life . I am in stage 4 with lymph mets, I am on 1gm Xeloda twice a day to slow the growth  of the CCA.it will buy me some quality time if it works. I have been on Xeloda for 3 months now.what stage you are on? any mets to other organs or lymph nodes.

if interest, below is a general view about chemotherapy.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

God bless.

17

(20 replies, posted in Introductions!)

Hi, Faisal,

At best,  it is disease stable, but most likely the disease is in a slow progress mode. The chemotherapy at best, if it is working, is to slow the growth of the tumor but not cure it.
The "ill defined mildly enhanced soft tissue" mostl likely is the early signs of mets at the surrounding area.(ie. lymph node metastasis )
"Obstructed metallic biliary stent......with dilatation " may require insertion of plastic stents through the metal stents to release the blockage if jaundice occur.
But I am not sure if it can be done if the location of the endobiliary stents is Way up inside the liver as compare to the lower locations near the left and right hepatic bile ducts.
God bless.

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.

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.

21

(39 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.

22

(39 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.

24

(39 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.

25

(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.