1

(20 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.

10

(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.

11

(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.

15

(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.

16

(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.

17

(4 replies, posted in General Discussion)

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 … 800#p76800


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

http://www.cholangiocarcinoma.org/punbb … 870#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.

18

(22 replies, posted in Introductions!)

Hi, Julie,
As you have already known, HAI pump is a clinical trial for ICCA patients ;it is a method that can directly deliver high dose  of chemotherapy agent at the site of tumor. Less  side effects of chemotherapy agents has been observed in colon cancer study as compare to traditional  intravenous method .

However, you are absolutely correct that recurrence rate for ICCA is>75% even after  liver surgery with R0 (clean margin). that is why we call ICCA as a chronic disease. I am a patient of ICCA for 58 months with 3 resections and 3 RFA (ablation); It is tough,but if you keep learning and watch your mom closely. you will enjoy lots of Christmas to gether in the years to come.

God bless.

19

(22 replies, posted in Introductions!)

Hi,

Generic names are universal languages for medications; try to find the generic names first in your country and but them;
Generic medications are the "Trade name equivalent " of that drug and should not make any difference in both drug efficacy and side effects. If the patent of the Trade name drug was not expired, get the name of the generic and bring it to a pharmacist to look it up for you in your country for the Trade name drug your country used. This is his  responsibility as a Licensed pharmacist. If I were you, I will just give the Trade name used in the States to the pharmacist and let them find it out for you. if they don't know or don't have time, go to another pharmacy.

God bless.

20

(7 replies, posted in Introductions!)

Quoted:
The scan they did in August during the chemotherapy showed that the tumor had shrunk, but still not removable. The scan she had in late December showed new nodules in her abdominal cavity. They repeated the scan at the end of January to monitor the new nodules. The nodules increased in number and in size.

The oncologist offered us three options. She could do nothing. She could do second chemotherapy (Xeloda + Oxaliplatin). She could do a clinical trial. He didn’t recommend doing a clinical trial because the chance of an experimental drug working is less than the standard chemotherapy.

What is the best course? I think doing standard chemotherapy or a trial. How soon should we start? Is there an on-going/upcoming trial that’s been beneficial? Is the recommended chemotherapy harsh?

Hi, Dani,

Sorry, I was under the weather for the last couple weeks,

Base on your message,  I really do think you should get a second opinion from Mayo Clinics( conservative) or MD Anderson( more aggressive in treatment choice,more clinical trials if there are any available ); call there for a GI specialist to coordinate your mom's multidisciplinary team review by liver surgeon,medical oncology,interventional radiologist and oncology radiologist on the spot to get a complete and up to date of your mom' s condition.
Avastin is a targeted agent, and if GEM/CIS seemed working before and stopped,I don't quite understand the reason. In general, if a regimen works ,it will continue until disease progress or intolerable side effects occur.
   A second generation sequencing(NGS) genomic profile through Foundation Medicine will most likely asked to have if biopsy is possible if you go to MD Anderson; Mayo has it's own lab and will do the same if asked. The reason to have that NGS is to help you find the either FDA approval or "off the label use" chemotherapy or targeted agent and immunological agents to treat your mom. But I will not surprise the NGS will find amplification or mutation of your mom's gene but still cannot offer any agent that of miracle benefit to treat your mom.  The point here is you know once for all, what will be the best possible choices for current treatment as well as for choosing clinical trials in the future. It is also true that your mom's data will be of benefits to those who will come after as patients like your mom and myself.

God bless.

Hi,everyone,
Sorry,Theresa,we could not find time to meet.
My appointment including one nite stay after the RFA  procedure. Everything works perfectly. It was the flu like symptoms that dragged me down after  went back home.
Have not eating  for 4 days, it just don't have the mood .
Thanks for your concern, I hope I will be back shortly to join the discussion board.
God bless.

22

(7 replies, posted in Introductions!)

Hi,
University of Iowa is the hospital to go to in Iowa, it is a very good regional but not specialized in cholangiocarcinoma . I was from that school.
Back to the question, for quality of life, doing nothing is an acceptable idea since she developed nodules in the abdomen and that is a bit difficult to treat. Sometimes Avastin may be of use when use along with Xeloda or 5 FU  and other agents. For some unknown reason , 5FU including its oral form Xeloda, works better for extra hepatic CC than intrahepatic . Major side effects are as KrisV mentioned above. In your mom's case, systemic chemotherapy or targeted therapy is the option, as well as clinical trials if she had done a next generation sequence genomic profile, if not, depends on your mom'a age and health status, , patient may try to have TIL @ NIH if qualify. ( please check the clinical trials on this web site for info) it is an immunotherapy with  very harsh pre-treatment immunosuppressant protocol,but the result is remarkable. One of our member is in the trial with very good result.
Since GEM/CIS  had been working fine before to shrink the tumors, it can be re- use to treat the tumors again too.
Just let you know, I am a patient like your mom and not in the same medical field as the doctors.
God bless.

23

(8 replies, posted in General Discussion)

Hi
I believe Dilantin was in Dr Patel article
In the reference articles, the first one

http://www.cholangiocarcinoma.org/punbb … 121#p57121

God bless.

24

(5 replies, posted in General Discussion)

Hi, Ceci,

Base on what your message reply, I will definitely seek a 2nd opinion on  interventional radiologist(IR) ASAP since the 11 tumors are on the right side.Radioembo or at least chemoembo  to the right lobe will be helpful to decrease the tumor load of the liver .But please remember, I am only a patient like your 42 year old daughter, I am not a doctor;  segmental radioembo or chemoembo are relatively easy procedure to have and if I were you, I will consider that first before targeted therapy.

God bless.

25

(5 replies, posted in General Discussion)

Hi,
you may have to report to the oncologist him/herself if the side effects that you described --"during the infusion and for about 3 hours after, she has some strange, scary symptoms: tongue-tied thickening feeling in the mouth – hard time talking; eye twitching; a very very heavy feeling in upper chest & swallowing area. " continue next time.
Folfirinox infusion is not easy to take and endured.

KRAS amplification (G12D)
TP53 R175H 
CDKN2A and B (loss of each)
CCND3 amplification

If I were you, I will wait after the next scan to hear what the doctor say first .All the above mutation or amplification or the loss of the gene function clinical trials ;2 of them are at Mass General on the east coast and most likely they will not let you to have 2 trials going on at the same time.therefore clinical will be my last resort since you still have chemotherapy and targeted therapy options. I do not know what location of your daughter's tumor, the size of them and the number of them;but in general, if there are a lot tiny ones and large ones up to a certain size,  segmental radioembolization(Y90) or chemoembolization of the lesions are some of the interventional radiation choices. If the tumors are <3cm in size each and no more than 4-5 in numbers, they can do RFA or microwave ablation.
Radiation such as SBRT and IMRT  done by oncology radiologist can be useful too in controlling the growth of the tumors.
Please remember,  chemotherapy is only one of the options to manage this disease; and as always, since this is a rare disease ,the patient population is small therefore competition for treating  patient is always a logical concern for patients and their care givers.We need to choose wisely.

God bless.