pcl1029
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Hi,
Replacing “Plastic” stents every 2 months is not uncommon here in the States .
Metal stents may last between 6-18 months in general.In your mom’s case,systemic chemotherapy like Gemzar+cisplatium or 5FU+ cisplatium will be a start because the tumor involves both the right and left hepatic artery and the main portal vein. In addition, there are nodal spread to the celiac axis and the aortocaval nodes. ; GEMOX or FOLFOX may be a better choice if the kidney function is of concern. it will be all up to the oncologist to decide after the lab work are done prior to chemotherapy each time.
Sometimes the chemotherapy will shrink the tumors enough to allow more choices of treatment down the road.
59 years old is young and should be treated aggressively if no other health problems involved. But it is all up to your mom to decide since this disease is difficult to treat and the ups and downs like a roller-coaster is not for everyone easy to accept both emotionally and physically.
There is currently no effective treatment for this cancer except may be surgery,but as you can see, it is a relatively comparison only. i had recurrence and have surgery twice ;but it still come back for the third time.
Keep up your knowledge on this cancer is a good idea to allow you to know what other options you can have.
God bless.Hi, Renee,
The following is the exact quoted from the consult from MD Anderson:
…To make some suggestions, if not done I would recommend genetic sequencing for additional genes …..
I also got another oncology consult from university of Chicago,,the direct quote
is as follow:
—I would also send the tumor tissue away for full sequencing if it has not already been done, just to see if there are any hints as to how to best treat your tumor….What i think is that they try to leave no stones unturned for future treatments since targeted agents are famous for developing resistance early.
I am EGFR positive, so they recommend Tarceva for me if all the tumor were removed completely by RFA and PEI.
BTW, if TIL from NIH is not for you, you may consider clinical trial of PD-1 and the like (PDL-1).(immunotherapy agents).
God bless.
Hi,
Actually China, Japan and Taiwan have the most combined population of cholangiocarcinoma patients and all theses countries are very upto the tasks to treat CCA. I am not sure about the Chinese research on this subject, but the Japanese are on par or even better in CCA research and proposals to treat this disease . So I do not think it is necessary to come here for treatment.BTW, the risk factor of your father CCA may be different than patient here in America and Europe. Here, in the States, without health insurance, most likely I will be dead by now or my retirement saving would be long gone after the three resections that I had. It does not worth the expenses. I know I have a couple patients whi did want to come here for treatment from China,since they can afford the expenses.
It seems to me that you are very good in English if you translate the pathology report by yourself to English.May I ask what professional fields you are in?
Please be sure to understand this is a difficult disease having a lot of ups and downs just be prepare and pray hard.
God bless.Hi.
Please note: I am only a patient and not a doctor.
According to NCCN guidelines: (American national comprehensive cancer network):
Extra hepatic CCA:( ECCA)
. For patients with resected,margin-negative ECCA with negative regional nodes, observation,fluoropyrimidine or gemcitabine based chemotherapy or fluropyrimidine based chemo radiotherapy are acceptable options.According to (ESMO),the Europe Society of Medical Oncology:
. For both intra and extra hepatic CCA, suggest supportive care or palliative chemotherapy and/ or radiotherapy after a noncurrative resection, and consideration of postoperative chemo radiotherapy as an option after complete surgical resection.So if I were your dad, since he is by all standard is relative young, and if he does not have other health problems like diabetes or fast heart beat( A Fib) and he has the distal kind of CCA which recurrence is the lowest among other form of CCA( 50%) I will suggest to follow the NCCN or the ESMO guidelines to have adjuvant chemoradiation as indicated. And follow your dad’s surgeon suggestion . It will provide a 10-15% chance for decreasing the chance of recurrence in the future.
But it is not a guarantee either.
But for sure, this will be a life changing event that no one wants, but the key is to keep uptodate knowledge about this disease ,CT Scan every3-6month, and try to catch the recurrence earlier enough to allow more treatment option rather than only chemotherapy.
Will your dad be treated here in the States in the future?
God bless.Hi,
If I may, Sandie, I had my 3rd recurrence in June,2013. It was about 20 months after my 2nd resection on Oct. 2011. Therefore we are a kind of similar in the tumor growth rate for intrahepatic cholangiocarcinoma(CCA).
Since I do not know about the medical systems in France, but if you can have a biopsy of the tumor to do a ” next-generation sequencing genomic profile “, it may be of value in current and future treatment. The idea was suggested to me in my 2nd consultation from MD Anderson for oncology consult .This CCA really a disease of its own; most other cancers, after the removal of the tumor will enjoy a much longer disease free period ,even primary liver cancer .
I know how it feels when CCA come back to say hi to me. But I know and prepare it will be back anyway because of the odds are high for intrahepatic CCA.
I will pray for you for your success in this second battle.
God bless.
Hi,
If you have time, the links below may be of value to you.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=47365#p47365
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
God bless.
Hi,
Will you tell me how old is your mom? ,any other health problems? How did she find out she had cholangiocarcinoma (CCA)? By accident or because of pain etc?
Is the tumor inside the liver only,or both inside the liver and the bile duct, or the tumor is only in or alongside the main common bile duct?
How big is the tumor and any lymph node or metastasized to other organs?
Ca19-9 result; bilirubin
; has any stent put in for bile obstruction?
It makes a difference in treating the cancer.
Who told you you have no other option? Is the oncologist ,or the radiologist or the liver surgeon ? Or all said no option?
I am a patient of this disease for 53months and I believe every patient deserve his or her chance to live . I make 2nd and/or 3rd consult on surgery,radiation and oncology and compare my options.
I do not think hyperthermia is the proper and only treatment for CCA.and if you notice this message link was almost THREE YEARS old.
So this can tell you something about hyperthermia whether still a popular
treatment or not.One exception, if you use local interstitial hyperthermia such as RFA or microwave ablation for the liver, if the location and sizes of the tumor allowed , it can achieved good outcomes., but in general, I do not think that is what you mean when you use the term hyperthermia .
What type of hyperthermia you are talking about? it may give me a better picture to answer your current and future question.
God bless.Hi,
I try to look it up on pub med but not much to be found.
One link interested me but of no immediately value to all of us,Carl, I think you can continue looking thru on the right hand column for additional articles
I think if you really like to use the herb as most people from India do( some of my co- worker do use curcumin every day as spices in their diet). I do not think it will hurt anyway.
But as Eli said in the message before, it is like the Chinese Herbal medicine, difficult to really get the active ingredient to study like western medication do,
It is a research required lot of time and produced very little in the current method of testing and inventing new drugs.http://www.ncbi.nlm.nih.gov/pubmed/23845850
God bless.
Hi,
I am a patient like your mom for 53 months now. I am not a doctor.What I can say is relatively speaking cholangiocarcinoma(CCA) is a slow growing tumor for the fact that, like your mum, who may have this disease for over several years especially if the diagnosis is intrahepatic CCA .
I also timed my recurrence for my tumor grow rate; it took about 10-12 months to grow an intrahepatic tumor from nothing to about 2.5×2.5x3cm.Based on CT scan results.
I also believe every patient ‘s tumor growth is different with regard to age, health conditions in the past as well as when the CCA is diagnosis.
I can even suspect that for the SAME individual,when recurrence occur,the actual cause of the recurrence may be different than when the first diagnosis was made too. I do not have medical scientific articles to prove my concept; but i am a 3 timer(having 3 recurrences in the last 53months) and like experimenting on my disease. but I am no doctor just a patient who was forced into researching this CCA subject more than I want to.I suspect gene mutations caused by pre-exist disease conditions like PSC,Hepatitis b or C; ulcerative colitis will do the damages.
on the other hand, enviromental causes such as eating raw fish from dirty rivers or ocean edges nearby will do the same damage. That is why ,when i buy fish, frozen or not, I always check the origin of the country, I only buy North Atlantic ,Canada and those which caught from the States. and I always tell my children who are in their 20-30s not to eat sushi with RAW fish in it especially from INexpensive sushi places.It depends what your expectation about the “successful stories” will be for a Stage IV patient if it will be the case for your mum.
If you mean to see a cure within the next 5-7 years; it may be a bit tough;but if you can use surgery, radiation such as ablation or immunotherapy and chemotherapy to manage your mum’s CCA as a chronic disease like diabetes;then your expectation of being a successful story will not be far behind.God bless.
Hi,
I think with more new technology coming into the market; We, as patients, have to make sure chemotherapy may not be fast enough for new drugs coming into the market and we must seek other alternative to prolong our lives until the magic bullet comes. thanks and
God bless.Hi, Gavin,
I think this concept can be applied to RFA and microwave in interventional radiation too.
Thanks and
God bless.Hi,
Below are the links that may be of value to your brother.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
God bless
Hi, Pam,
You are so brave to let us know what did actually happen in such a difficult time when the passing of your daughter, Lauren, still very much fresh in our minds.
I sincerely thank you for your courage and the eagerness to continue helping those who need you the most, our members on this message board.
Please by all means helping yourself first. Pam, I am just a simple Midwestern man,I know I cannot fully express myself emotionally especially in a situation like yours ,so please forgive my short coming.
God bless.
