Topic: Intro from 28 year old in Greater New York area

Hi All,  

I have been following this blog for a few months and wanted to take this opportunity to properly introduce myself.

I'm a 28 year old from the CT/ NYC area who has been diagnosed with intrahepatic CC this past June. More information about my diagnosis can be found on my blog at http://connectwithjoe.blogspot.com. As you can see from the blog, I have an incredible support network, especially my mom, sister Lis, and Sarah who have been instrumental in navigating through these unchartered waters.

I have a CT scan scheduled with my Connecticut oncology team later this week to check progress after my six chemo sessions.  My doctors plan on keeping me on this same treatment plan for the foreseeable future. 

I feel extremely comfortable with my team of doctors (oncologists, surgeons, radiologist, etc.) at both Memorial Sloan Kettering Cancer Center, (MSKCC) and St. Vincent's Hospital/Swim Cancer Center. 

I wanted to reach out and have some open communication in case anyone had any questions or insight. It certainly is a small world of intrahepatic CC patients, especially in my age group!

Good wishes to everyone battling cancer out there!

Joe Garassino
Mj_garassino@yahoo.com
http://connectwithjoe.blogspot.com

2 (edited by PCL1029 Thu, 13 Sep 2012 20:04:07)

Re: Intro from 28 year old in Greater New York area

Hi,
Welcome to this site.Thanks for Cathy's e mail, I have found out that your chlangiocarcinoma mets to the bone of your left leg.May I ask what chemotherapy you used .Base on the CT scan on your blog,the intrahepatic tumor looks more than just one big one.
anyway,if you have questions in the future,welcome to ask us anytime; I am not a doctor ;I am just like you, a patient of this disease for 39 months.And as always, there are other people can be of help to you too.
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: Intro from 28 year old in Greater New York area

Joe, Welcome and sorry you had to find us. The good part about finding us, is there is a lot of love, companionship and info here.
I am a CC survivor, 3 years and 3 months!! I have an amazing story to share, full of HOPE, please read it on my FB page (Catherine Sims Dunnagan).
Lots of prayers-Cathy

Re: Intro from 28 year old in Greater New York area

I am so glad you joined this group, Joe. There are so many amazing people. You will never feel alone and someone will always have an answer to any question and everyone is so willing to give support. I am the Pam from Pam and Lauren that wrote to you last week after you commented on my blog. Bless you and I will be praying for great scan results.

-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: Intro from 28 year old in Greater New York area

Joe....i would like to follow the others and welcome you to our site.  I am glad that you have found us.  Indeed we are a small community, but we are together in the fight against this disease.  I love your blog and especially the pictures of Yosemite. We should compare - some of mine look very similar. 
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: Intro from 28 year old in Greater New York area

Hi Joe and a big welcome to our extraordinary family but sorry you had to join us!
It sounds like you have everything in good control and SK is one of the best places you can be. I really liked your blog especially that little guy who "thinks" you are his master! Could you tell us a little more about your Diagnosis? I will be wishing for you to have good Scan results and now that you have introduced yourself properly keep us updated on your progress as we truly care!

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: Intro from 28 year old in Greater New York area

Welcome Joe I started reading your blog,and will continue,hope all goes well with your scans'my husband was diagnosed Aug 11th with a distal tumor in his lower bile duct'im very grateful for this site and all the help and support all these wonderful people have to offer.    Lynn

Re: Intro from 28 year old in Greater New York area

Welcome Joe,
You have found an amazing group of people on this board; so full of love, support and great information.
Lisa

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: Intro from 28 year old in Greater New York area

Welcome Joe.  Sorry you had reason to find us but the people on this board are amazing.  I will start following your blog.

Best of luck to you.
-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: Intro from 28 year old in Greater New York area

Thanks for everyone's kind response.  I will be sure to keep you posted with updates.

PCL: the chemo that I have been on to date is Cis and Gem and yes the tumor met to the left femur. 

There hasn't been many recent updates on my blog but please feel free to check back from time to time for updates.  Thanks again, all.  Joe

Re: Intro from 28 year old in Greater New York area

Hi, Joe,
Hope everything is ok with you on your last CT scan result; just to say hi ,
Keep in touch,
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: Intro from 28 year old in Greater New York area

PCL: Unfortunately, it was not the best update and I have immediately been taken off the CIS and GEM to try a new path of treatment .The new drugs that I had for my first time are Flourouracil, Oxaliplatin, Leucovorin Calcium and Irinotecan.

THe cancer is now evident in the right femur, both lobes of the liver, the lung, the rib, and the spine. 

Thanks for checking in and i'll do my best to keep updating everyone. 

Joe

Re: Intro from 28 year old in Greater New York area

Joe, I am so sorry to read about your update! Here is hoping the new drugs work a few miracles, we do have them you know. Just a matter of hitting on the right chemo cocktail. We are all wishing the best for you and look forward to your updates when you can.  I am sending you all the best vibes, prayers and thoughts I can!

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: Intro from 28 year old in Greater New York area

Hi,Joe,
Thanks for your update.
I know, as a patient myself, this is not a journey we want to venture into.
And I know , most of us have to fight until the end with or without a miracle.
With my heart, I sincerely hope for the best possible outcome for you.
Joe, may the Grace of Jesus Christ, extends His hands to  heal you as
He extends His On me.
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: Intro from 28 year old in Greater New York area

Joe....not the news any of us wanted to hear.  Know that we are rooting for you and that a tidal wave of good wishes is heading your way. 
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