pcl1029

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.

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, 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.

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,

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.

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,

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.

Hi, Stella,
Quoted:
Question: I read lists of symptoms of Intrehepatic Cholangiocarcinoma..but how does one deal with them?
1. When my husband turns yellow, is there something that can be done to ease off the jaundice (which comes and goes)?
2. The continuous nausea that is keeping him away from his job… he has tried just about every pill and suppository on the market… and any relief is short lived. Any natural remedies / suggestions?
3. Are swollen feet a symptom of the disease? Although not painful, the swelling is very obvious. I have been told that it is poisoning from constipation, which he has as a result of the Oxy medications he is taking.
4. At times he has trouble swallowing. Medication in large capsules has to be opened and sprinkle of his breakfast oats or in yoghurt. What causes the swallowing difficulties.
5. It is a week since the end of his radiation treatment. Could any of these symptoms still be side affects of the radiation?
Thanks for you assistance.

Sorry not to answer you sooner; since I was in the hospital in and out for the past two weeks.

First, with regard to medications “trade name vs generic name” if you cannot find the generic name of a product widely prescribed or used in the States, please put them up on this message board, I will be happy to find the generic name for you so your local pharmacist can help you to find them.

Generic name are universal languages for medications,pharmacists are supposed to know them or find the way to translate for their customers especially those working in drug stores because counseling patients is part of their responsibilities as well as drug interactions(“ie: patient should take famotidine(Pepcid), at least 12 hours before taking erlotinib(Tarceva),”at least in the States .
diphenylhydramine(Benadryl);prochlorperazine (Compazine) ;Ondansetron
(Zofran) ; aprepitant(Emend) etc. When I need medications at home(Hongkong,china or in Israel last summer; I asked for Coumadin, without asking one more question, the pharmacist in Israel give me warfarin which is the generic equivalent. So I think your local pharmacist just had a bad day and was not that eager to help you out.
Now ,since I am an intrahepatic CCA patient, I hope I can provide my experience and knowledge to answer some of your questions to your satisfaction.
First, check out the link below, it is my personal medical history and you may or may not get anything out of it to help you since every ICCA patient is different due to the location, number, size and environmental and family medical history.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=76800#p76800

to answer question 1. check the link below as well as read the fourth message above too.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=51870#p51870

for answer q#2 : the patient can try prochlorperazine (Compazine) ;Ondansetron(Zofran) ; aprepitant(Emend) ,since you didnot mentioned the degree of symptoms, I will defer the decisiojn to your GP or oncologist. The above list is for mild to strong medicinal property of the drug itself. ginger juice 2 teaspoonful (10ml) help too.

for answer to Q3 and 4:
feeling nausea and swallowing difficulty and constipation or diarrhea are side effects of Oxcontin ;dose adjustment may help but I will ask the oncologist rather than the local drug store pharmacist. Swelling of the lower extremities is a sign of edema or fluid accumulated in side the body due to the lymphatic system cannot remove the water efficiently partly because of the underlying disease ICCA.Ask the GP to prescribe medications for you;at the same time, ask the doctor to check the swelling,esp. if it is occur in the lower legs and thighs area for potential blood clots like DVT(deep vein thrombosis).

No answer to question #5, I just don’t know.

BTW, I am a patient of ICCA and not a MD; I hope I can clear up some of your questions about what you have been feeling about the information on our web site;we always try to provide experiences and also the most up to date medical related information to our members to help their roller coaster ride of having this disease of cholangiocarcinoma.

God bless.