Topic: Hey!

So I have been getting on here and reading for about 3 months now.  Thought it was time to start an account. I have learned so much from reading on here!  I was diagnosed with intrahepatic cc in April.  So far they say no to surgery and such.  I hope down the road that will change.  Mine had spread all over my liver, in the lymph nodes of the first part of my stomach, at the tip of my gallbladder however I'm kind of confused about that and I don't think it's there anymore.  I also have several small spots on my lungs, it is unknown right now if that is metastasis.  I am seeing Dr. Varadhacaury at MD Anderson, however I am currently trying to switch to Dr. Javle.  I am 30 yrs. old and have a 1 yr. old son who is my whole world!!  I do Gemzar and Cisplatin every 2 weeks and am tolerating it well.  I drink water all day long, eat lots of fruit and veggies, and try to stay away from anything out of a box or a can.  Look forward to getting to know some of you smile

Re: Hey!

Hi.  Welcome to the site and sorry you had to find us.  We are about the same age.  I was diagnosed at 31 with intrahepatic CC.  I was fortunate to be able to have a resection.  I am 33 now.

You will get a lot of support from this board.  Please keep us updated on your treatment.

Take care!

Susie

3 (edited by marions Thu, 25 Jul 2013 22:41:42)

Re: Hey!

Donna...welcome to our site.  I am so sorry that you had to find us due to this disease but, I am thrilled to have you join in.  Congratulations on your positive response to the chemo regimen.  How are you handling the treatments? Tired, nauseous?  What were the results of your latest scans?  And, why are you planning on switching oncologists?  I love your focus on healthy food however; you would want to make sure to take in plenty of protein too.  Staying active is important also, but I am sure that your little one is keeping you on your toes alreay.  Others will be around real soon to welcome you also (they always do) and please know that we are a tightly knit group of people with a common interest: the disease of Cholangiocarcinoma.
Hugs to you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hey!

Hello Danna,
I just want to welcome you and lift your spirits as you navigate this thing called CC. Youre braver than you know and won't regret coming out of the shadows to introduce yourself to these loving, smart, supportive people here on this site. It bothers me deeply (understatement!) that you are so young and have a baby and have to fight this. My sister has CC and a 9 year old boy. She is doing quite well despite having stage 4 Intrahepatic CC.  Have heard from people on this site great things about Dr Javle. With your good attitude, the joy of being a Mommy and your healthy habits, you can really make a difference in your health and well being! Tiffany is another amazing example of a young mom who has come so far managing CC and a family. Glad you're tolerating the Gem-Cis well! One step at a time...
Willow

Willow

Re: Hey!

Hello Danna, welcome to the best little club in the world that no one wishes to join. We whole heartedly welcome 'lurkers', ha, ha. I can tell you that your attitude will get you far. Attitude is not everything it's the only thing. You also have a whole lot of courage. I am always so upset by how many younger adults we are getting and in my feeble mind there just HAS to be some common denominator here! Sure wish I knew what it was. Good luck on everything and so glad you decided to join. Please keep us updated as we are a nosey bunch! Know that you have come to the best place!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hey!

Hi Dana!  I have been MIA for some time now but have decided that I must come back and give my insights to people on this board.

My husband passed away from CC almost 2 years ago.

I would be happy to answer any questions to the best of my ability.

Hugs,
Margaret

Re: Hey!

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!

Hope, love, strength...2013 and for the years to come, Porter.

8 (edited by clarem Thu, 25 Jul 2013 16:19:35)

Re: Hey!

Hi Danna,

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.

Clare

In the stars now . . . .

Re: Hey!

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 prayers

10 (edited by PCL1029 Thu, 25 Jul 2013 18:35:33)

Re: Hey!

Hi,everyone,

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hey!

Hi Danna,

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,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hey!

Hi,everyone,

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hey!

Hey, Percy. Thanks I like that article! Hope they watch the fish.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hey!

Hi, Lainy,
You are always welcome.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hey!

Hi Danna,

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.)

Re: Hey!

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!

Re: Hey!

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hey!

Hi Danna,

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.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Hey!

Hi Randi,

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.

Clare

In the stars now . . . .

Re: Hey!

Hi,
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?

Blessed2be

Re: Hey!

Hi,
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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.