Topic: New member introduction

Good morning.  I was diagnosed with Cholangiocarcinoma Dec 10, 2012 while in FL and flew back to NJ for further evaluation.  On Dec 26 I had surgery for resection but could not complete due to abdominal/pelvic turmors.  I am now on chemo at MSKCC (in NJ) Gem/Cis and after 2 weeks doing well.  No side effects yet and energy is returning.

I dealt with the initial shock in Dec. and handled the legal matters necessary so I can focus on living with this disease for many years.  I know that cure is unlikely but co-existence will suffice.  My family has been by my side from the start of this journey and that is my source of strength and hope. 

Not one to dwell on medical details...just want to give & receive encouragement, support and news.  We are starting to research clinical trials and orphan drugs for future treatment when/if that becomes appropriate.

Eric

Re: New member introduction

Hi Eric,

I would like to welcome you to this site and tell you that I am very sorry to hear you have CC. My daughter, Lauren is the one living with CC. Could you tell us a little more about yourself. Like age, occupation, family. We are like a family here and really are interested in learning about our members. I am sorry the resection could not be completed, but happy chemo has not been too bad on you. I am also pleased to know you have a supportive family. That helps so much in dealing with this cancer. I wish you all the best and hope to hear more about you in the future.

Hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New member introduction

Pam, thanks for the kind words and sorry to hear about your daughter.  I have 3 adult daughters and can honestly say I am glad I am dealing with this instead of one of them!

I am owner of a real estate office in central NJ so it is difficult to continue working while being treated.  My team has provided a lot of support for me and my clients, so I can focus on what I need to. 

I have lost a lot of wieght, but my appetite has improved and I am able to eat nutrious foods even though my taste is off most of the time.  I have stabilized and we are happy with current situation...but I miss my glass of wine with dinner!

This is my week off chemo so if the weather improves I hope to get out a bit after snowstorm.

I have set a goal for living with this disease that far exceeds what my doctors are telling me is likely.  I believe that I can live & enjoy life and will not let statistics get to me.

Eric

Re: New member introduction

Thanks for getting back to me so quickly, Eric. You sound like you have a very positive attitude, which is very important. Lauren has remained positive since being diagnosed. She has been on chemo since Sept. 2011. We have lost count on how many times she has had chemo, but I would guess 40 or more times. She has also had Theraspheres, which is radioembolization. She was inoperable when first diagnosed, but just recently that has changed. She will have 2 surgeries. The first one will be the end of March and the second will be 6 weeks later. This is what we have been hoping for since the beginning. So never say never and don't ever give up hope. Lauren went on disability fairly soon after being diagnosed. It must be difficult being a business owner. I'm sure along with your cancer, you have many worries with your business. It is nice to hear you have such a supportive staff. That shows you must be a terrific boss!  Take care, Eric. Hope to hear from you again.

All the best,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: New member introduction

Dear Eric, welcome to our extraordinary family but sorry you had to find us. It sounds like you are doing all the right things and doing well at it. BTW, Teddy never had chemo but the ONC relented on the wine and told him a small glass a day would not not hurt anything. Unfortunately he lost his taste for it but the offer did make him feel good. You know these Sicilians and their red stuff! Your attitude is great and will see you through this unwanted journey in the best of ways. Your daughters I am sure, see their Dad now as the super hero he is! It is wonderful that you have such a good support team all around you and now you can add us to your grand circle as well. Wishing you good things to come and for the snow to quickly melt!

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: New member introduction

Eric...I would like to follow the others and welcome you to our site.  This is what I think about statistics:  it covers a broad section of the patient population.  You however; are one unique person within this group presenting with your very own disease, response, and physical and emotional makeup.  Hence this disease is all about you.  And, even if we like to consider statistics to be measureable guide, we should remember that   someone has to be in the top tier of the statistical equation.
I am wishing for continued, positive response to your treatment and please, stay with us.  We are in this together. 
Hugs,
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: New member introduction

My sincere thanks to each of you for sharing and supporting.  The will to keep on living, loving and working is very strong in me.

Re: New member introduction

Hi Eric!  My name is Jayne and my husband, Ken, was diagnosed in January after a lengthy process of trying to figure where his cancer was.  Surgery was not an option as his lymph nodes are involved and his oncologist did not think it wise to wait to start chemo after a possible 3-month recovery period from the surgery.  So, he started his chemo two weeks ago and will have his second treatment tomorrow.  He was only given one drug; Gemcitabine, but they are planning to add a second (don't know what yet) tomorrow.

He is 57.  We have four grown children and a wonderful support system.  He's doing very well at this point. He did not have any nausea and although he does get more tired than usual, has no other symptoms.

I am so thankful for this website and the people who have already embraced Ken and I.  The best advice I've already gotten is not to focus on statistics.  You are not a statistic and miracles do happen!  Best wishes as you continue your treatment.

Jayne

9 (edited by jathy1125 Mon, 11 Feb 2013 18:28:49)

Re: New member introduction

Eric, I also want to welcome you to our CC family. This site is was one of the few blessings CC comes with!! I am starting my 5th year after being told I had 6-8 months to live!! I am also very LUCKY, because I did qualify for the clinical trial program involving a transplant. Please read my story at www.catherinedunnagan.com  (under the telegraph link)it  will give you HOPE.
Keep the positive attitude and keep making memories!
Lots of prayers-Cathy

Re: New member introduction

Eric,

Welcome to this site with a group of the warmest mostly welcoming people every.  Sorry you had a reason to join us here.

Sounds like you have a fighters attitude which will serve you well.  I hear MSKCC is awesome and it sounds like you are in good hands.

Take care and welcome.
-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: New member introduction

I would also like to add that statistics are "old" in a sense that the data is compiled and analyzed a few years after the information is gathered.  Therefore, we won't see "current" applicable data.  Treatment options such as aggressive surgeries, advanced radiology treatments, and a multitude of chemotherapy regimens including targeted therapies, have only been around for the last 3 to 5 years and research continues to accelerate. In fact, we don't know what is around the corner for us.  I hope this helped put your mind at ease in regards to statistics and what it means to you, the patient in the year of 2013.
Hugs to all,
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: New member introduction

Hi Eric,

Welcome to the site. Sorry that you had to find us all and I'm sorry as well to hear what you are going through. But I'm glad that you've joined us all as you've come to the right place for support and help, and I know you will get a load of both.

Not much that I can add to what has been said already, but I wanted to join the others in welcoming you here. Loving your positive attitude Eric and your fighting words as well! And yep, not letting stats get to you sounds like a good plan to me! Keep coming back and know that we are here for you.

Best wishes,

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: New member introduction

Hi,
http://www.cholangiocarcinoma.org/punbb … hp?id=8678
http://www.cholangiocarcinoma.org/punbb … hp?id=9510

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.