July 29, 2013 at 8:58 pm #73987
I am not trying to discourage you or anybody but the fact is that recurrence is VERY common(50-75%) in cholangiocarcinoma(CCA). I am 63 and have my most recent 3rd recurrence in June,2013.
To treat this CCA as a chronic disease like hypertension or diabetes is one of the way to deal with this roller-coaster disease.
For me the ultimate hope is that I can last as long as possible in time for the new drugs to come around to either cure this disease or prolong my life without affecting the quality of my life.(time frame estimated is 5-7years).
With regard to your second question, yes, I agree with your doctor for chemoradiation and adjuvent chemotherapy.( but please remember, i am only a patient and not a doctor)
The best way to help yourself is by keeping uptodate knowledge of this disease and may be of benefit to you to ask your surgeon to see whether he can order or arrange Caris Life Science or Foundation Genetics to have your tumor tissue to perform ” a next-generation gene sequence” for you; the benefit is that,in case recurrence occur, or if the current treatment needed to be revised,you will have the genetic info for oncologist to provide you the most effective targeted agent that match your gene profile for treatment. It saves time and expenses in the future .
God bless.July 29, 2013 at 7:09 pm #73986blessed2beParticipant
I was diagnosed with CC in May and had a liver resection in June,where a benign gall bladder and 3 lymph nodes with malignancy were removed also.Tumor margins were clear and doctor felt that all was good. Now getting ready to start oral chemo and radiation. After reading some of the discussions, I am thinking that I am not well educated because it appears that even with the treatments, there is a risk of having CC again. Am I understanding this correctly?
Doctor has advised that I can do IV chemo after completing the radiation if I want to be real aggressive? Should I do this?
Blessed2beJuly 29, 2013 at 12:17 pm #73985claremParticipant
I too wonder if those affected in young age are disproportionally represented because they are more IT aware and online as a way of life. Compared to my dad who thinks forums and Facebook are voodoo and all things evil i check,in here every day ot two. It seems at times that going by the posts that there is no distinction in age groups despite all the credible medical saying it is even rarer in those younger than 60.July 28, 2013 at 3:48 pm #73984RandiParticipant
I wanted to stop by and welcome you. So sorry you are going through so much at such a young age.
I have a theory about the young people on this board that has less to do with the disease itself. I think we see young people because younger people are more savvy about being online and finding information online when they need it. So maybe we see a disproportionate number of young folks here because of that.
I am glad to hear you are tolerating chemo so well and that you have seen no growth and some shrinkage. Both of those are music to our ears here on this site.
Take care and keep us posted.
-Randi-July 26, 2013 at 7:29 pm #73983lainyParticipant
STOP everything. Do my old eyes deceive me? MARGARET! Is that you? So sorry I ran right past your post. OMGoodness, good to see you. How are you doing, girl? You have been missed! For our newbies Margaret goes back a ways with us. It really is good to see you and we hope you will stick around with us.July 26, 2013 at 6:58 pm #73982danna0325Participant
Thanks Gavin for the warm welcome!
Betzeegirl, sorry about your husband. I have heard a lot about Dr. Kato, if I’m not able to switch to Javle I am going to contact them. Thanks for the info!July 26, 2013 at 6:33 pm #73981betzeegirlParticipant
Dr Javle is tops, but you may also want to run your situation by Dr. Kato at NY Presbyterian Hospital (622 W 168th St # 105 New York, NY 10032 (212) 305-5101
He specializes in the most difficult cases!
My prayers go out to you and everyone else on this board. (My husband was dx last April, and though he was able to have surgery the outcome was not too good.)July 26, 2013 at 5:53 pm #73980
You are always welcome.
God bless.July 26, 2013 at 4:59 pm #73979lainyParticipant
Hey, Percy. Thanks I like that article! Hope they watch the fish.July 26, 2013 at 4:45 pm #73978
FDA Issues Two Proposed Rules under FSMA to Strengthen the Oversight of Imported Foods
July 26, 2013
Today, FDA issued two proposed rules under the Food Safety Modernization Act (FSMA) aimed at strengthening assurances that imported food meets the same safety standards as food produced domestically. These new measures respond to the challenges of food safety in today’s global food system, in which imported food comes into the U.S. from about 150 different countries and accounts for about 15 percent of the U.S. food supply. They are part of the effort mandated by Congress to modernize the food safety system and focus on preventing food safety problems, rather than relying primarily on responding to problems after they have occurred.
Under the proposed rule for Foreign Supplier Verification Programs (FSVP), importers would need to verify that their suppliers are meeting the same U.S. safety standards required of domestic producers. Requirements for verification activities would be primarily based on the type of food, nature of the hazard identified and on who—such as the foreign supplier, the importer, or the importer’s customer—is best able to control the hazard.
Under the proposed rule for Accreditation of Third Party Auditors, FDA would recognize accreditation bodies based on certain criteria such as competency and impartiality. The accreditation bodies, which could be foreign government agencies or private companies, would in turn accredit third party auditors to audit and issue certifications for foreign food facilities.
The two proposed rules work together with the standards proposed in January 2013 for produce safety and preventive controls in facilities that produce food for humans. The two proposed rules publish in the Federal Register on July 29, 2013. Comments on the two new proposed rules on the safety of imported food are due by 120 days from the publication date.
God bless.July 26, 2013 at 5:37 am #73977gavinModerator
Welcome to the site. Sorry that you had to find us all here and I’m sorry too to hear what you going through right now. But glad that you’ve joined us here as you’re in the best place for support and help and you can expect a load of each from everyone here! Glad to hear that you’ve been lurking and learning and that the posts have been of help to you, and even happier as I said that you’ve taken the plunge and joined us all.
Thanks for sharing whats going on with you and I’m glad that the chemo is going well, fingers are crossed that that continues for you. If we can help in any way then we sure will, all you have to do is ask and we’ll do our best to answer you. That certainly is a healthy diet that you are following! Remember to let us know how things go for you with everything and I hope that your transfer to Dr Javle goes through. We are all here for you and we care.
My best wishes to you,
GavinJuly 26, 2013 at 12:46 am #73976
Since I join this message board about 2 years ago, There were relatively more younger patients as the times goes by.
This disease should be for the age group between 50-70’s and not for the younger ones like in their 20 and 30’s.
Unless the younger patients have predisposed disease condition like ulcerative colitis ,bile duct genetic disease or PSC, they should not have this horrible disease when their immune systems are in their prime state.
I suspect the environment plays a definite risk factor in such a younger generation; may be the global trading especially the frozen food,vegetables. or the restaurants that open the new trend of eating and dinning of Asian cuisine where the temperature of the cooking is of concern.
God bless.July 25, 2013 at 11:19 pm #73975danna0325Participant
Thanks everyone for welcoming me. Sorry if I miss answering some questions. Willow, how long has your sister had cc? How does her son do with it? Margaret, sorry to hear about your husband:(. Marion, the treatment just makes me fatigued and muscle aches for a couple days. First scan after treatment showed slight shrinkage and nothing new. I will have another one on the 19 th. Lainey, yes. Too wonder what the common denominator is w all the young people. Could it be our American diet full of taco bells and dr peppers?? Pfox2100, thanks for the welcome. I hope you have a good support system. Everyone on here s in my prayersJuly 25, 2013 at 11:19 pm #73974claremParticipant
I just want to welcome you. You won’t regret taking the step fom lurker to poster. I lurked here when my 41 year old sister was diagnosed last year. The support is just incredible.July 25, 2013 at 10:42 pm #73973pfox2100Member
Hi danna welcome I just joined last week and was diagnosed a few days before that. This site has been wonderful. I just wanted to reach out to ya. I am 34 single mom of 2 kids 8 and 6, so I know exactly how you feel. Though I will start getting more info on my diagnosis Tom when I meet with my onc. Much support and care towards your way!
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