• From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Topic: Anyone near the Rochester, NY area?

I was just reading how pam and lauren met up with lisa and I was thinking how nice it would be to meet up with other CC survivors in person.
I live in Rochester, NY and was wondering if anyone on this forum lived near by. I would love to meet up with someone.

-Randi-

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,211

Re: Anyone near the Rochester, NY area?

I so hope you do and wouldn't it be wonderful if everyone could meet up with someone?????

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Anyone near the Rochester, NY area?

Randi - I hope for someone to contact you. Postings do become lost in our numerous threads therefore, it really helps to repost the question in regular intervals.  Eventually you will be successful. 
All my best wishes,
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
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Anyone near the Rochester, NY area?

Wishing you luck in meeting somebody Randi. I wish I lived closer. It would be so nice to meet you. I wish we could all have super powers that would allow us to travel with the blink of an eye. Then we could all have lunch together. Take care.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

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.

Pamela's Website

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Anyone near the Rochester, NY area?

Marion: 

What do you think about creating a category (like the general discussion, good news) for "where are you?"  Maybe that would give people a place to connect?  You could create threads for regions  "northeast", "southwest" etc. and people could put their locations in there the appropriate region?
Just a thought...

-Randi-

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

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

6 Reply by marions (edited by marions Tue, 03 Apr 2012 17:32:31)

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Anyone near the Rochester, NY area?

Great idea, Randi.  Would you mind reposting this in the "Suggestion" portion of our site?  I will follow-up with your request at our upcoming board meeting.
Thanks a bunch,
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
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,211

Re: Anyone near the Rochester, NY area?

EXCELLENT, Randi!

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.
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Anyone near the Rochester, NY area?

Reposted in Suggestion section. Thanx Marion.

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Amy
  • Member
  • Offline
  • From: Farmington, New York USA
  • Registered: Mon, 02 Apr 2012
  • Posts: 16

Re: Anyone near the Rochester, NY area?

Hi Randi
I am a new member.  I just posted yesterday.  My husband has intrahepatic cc, diagnosed this year,  and it is his second primary.  The first was a renal cell ca in 2004.  We had wonderful care at Strong Memorial and are following up at Wilmot.  The resection was done end of January, with a very heroic surgeon.  He is going through tomography (IMRT) and on xeloda which will then follow with gemzar.  We do live in the area, Farmington, so there is someone close to you! If you get the chance read the post under introductions, my name is Amy.  Glad there is someone close (and as sad as it is,  with multiple primaries to boot).  We are still in disbelief with all this, any thoughts are so appreciated!
~Amy

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Anyone near the Rochester, NY area?

Hi Amy,

Sorry you are going thru all this!  I also had my treatment at Wilmot Cancer Center.  I had a whipple and my surgeon is James Peacock.  My oncologist is Alok Khorana.  Curious as to who your husband has been seeing there and also who his surgeon is.

I live in Hilton which is northwest of Rochester (about 40 mins from Farmington), but I work in the city most days and from home the others. 

I had surgery the end of 2009 and 6 months of chemotherapy (Gemzar) in 2010.  if you have any questions please feel free to ask.  I've been treated at Strong for all of my cancers so unfortunately I have experience with a wide array of doctors there.

Hang in there!
-Randi-

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Amy
  • Member
  • Offline
  • From: Farmington, New York USA
  • Registered: Mon, 02 Apr 2012
  • Posts: 16

Re: Anyone near the Rochester, NY area?

Randi,
His surgeon is Dr. Mark Orloff (Solid Organ Transplant and Hepatosurgery) and our oncologist is also Alok Khorana.  What a small world!!!  The radiation oncologist is Dr Katz.  Dr Orloff was the best.  My husbands case was presented to the tumor board several times and the GI conference there.  Radiology was convinced the resection could not be successfully done as there may not be enough remnant liver left.  But he thought he could get it and did.  The surgery actually ended up being delayed by an hour due to debate.  We were really pushed through fast, because of the severity when the symptoms finally presented itself.  Hilton is a great little town.   We work in Henrietta.  Thanks so much for the reply, lets keep in touch!!
~Amy

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Anyone near the Rochester, NY area?

Amy,

I also met with Dr. Katz but didn't end up having any radiation.  It is a small world.

Glad your hubby was able to have surgery.

If you want to send me an email feel free. randi.barrell@gmail.com.

Best of luck,
-Randi-

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 772

Re: Anyone near the Rochester, NY area?

Randi:
The closest I get is NYC for treatment. Sorry. That is one of the things about this rare cancer: at least we have the site, but to actually live near other cc fighters is rare. I've met Kim (Let's Talk Cancer radio show) and I hope to meet Jim Wilde soon, but we really don't live that close to each other. Kim is about 45 min. away and Jim is a couple of hours.
I hope to go to Alabama and visit my parents this year, and will try to meet Tiffany, as she lives about 5 minutes from my parent's house.
I hope you find someone who lives near you. It would be nice to have someone to "commiserate" with about this horrible disease.

Kris

Don't just have minutes in the day; have moments in time.