Newby in Richmond VA, travels to MSKCC
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Susan,
I wanted to introduce myself to you because I live in Richmond also. I couldn’t believe when I saw you were from Richmond because now there are four of us. For a rare cancer to have four people in one area is crazy. The sad thing is that three of us travel out of state for treatment with Massey right here and no one there is even working to get clinical trials here.
Anyway, I am a 55 year old wife and “meme”. I have Extraheptic cc and did have surgery. I will list my Drs so you will know who I use. I was diagnosed in Jan. 2015. My surgery went great but when I started with my first oncologist things didn’t go so well and the emotional crazy roller coaster ride began. That is how I found this wonderful group of people on this board and with their encouragement and help I got it together and I’m fighting. You can learn a lot here and get all the support you need.
my surgeon was Dr. Ralph Layman (my hero)
Started with an onc at Va Cancer Institute (parted ways don’t have anything nice to say)
Dr. Ryan Raddin at St.francis Cancer (love him)
Dr. Sharoff at MD Anderson (Houston, Tx) (just started there in June and very impressed)
My email address is sball87@comcast.netWelcome to this site and many prayers on your treatment.
SherriSusan,
Welcome and congratulations for such promising results already, I hope we get to hear may positive updates in the future as well.
Take care,
CatherineSusan….I too would like to welcome you to our site. As Lainy mentioned, already you have excellent response to treatment with minimal side effects. Fantastic news. I hope for others to share their experiences with you as well. In the meantime you may want to use read up on postings from others implanted using this special pump. By entering in the “search” function “hepatic Infusion pump”,” hepatic liver pump”, “liver pump” you should get some results.
Again, thanks for joining us and please stay with us. We are in this together.
Hugs,
MarionSusan, it is a pleasure to meet you as well, just hoped you didn’t have to find us, but you did come to the best place for CC support. It sounds like you have not only done the right things you have done the best things! Most of all your attitude will get you far, love it. A 40% reduction is like all holidays rolled in to one! We are all family and look forward to watching your PROGESS so please keep us updated in your loop. Below is a site you may find helpful and all the best to you!
http://cholangiocarcinoma.org/newly-dx/
HI, ALL! So glad to find some understanding company on this journey. I am a 51 year old wife, mom, GiGi (grandmother) and voice teacher living in Richmond, VA.
What I thought was a gall stone twinge became multifocal intrahepatic cholangiocarcinoma on March 8th , 2015. 2 Liver tumors were 12cm/8/cm/12cm and 2cm/2.1cm. NO other symptoms. Found in an ultrasound in the ER in Richmond. Dr.s in Richmond said resectable, got in to MSKCC and tumor team disagreed.
Dr. Kingham did surgery, implanted the HAI pump, rerouted blood vessels, removed a perfectly normal gallbladder, and removed 2 nodes – one positive, one neg. I am currently Dr. Kemeny’s patient , and in the phase 2 trial there. We do systemic chemo in RIC every 2 weeks, and Chemo in the pump and tests in NY once a month, now. 1st MRI following only 1 treatment showed a nearly 40% tumor reduction, and I’m tolerating chemos well. I am thrilled to find a group of you on the same rocky road with this “boutique” cancer. Staying positive, informed and living every moment I can. It’s a pleasure to meet you all,
Susan
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