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Dec 19, 2019 · Calling all Cholangiocarcinoma/bile duct cancer Patients in Cancer

I forgot to include this photo of me and my "No man is an island" dad in my last post. This photo was taken over the summer on the Boston Harbor.

Dec 19, 2019 · Calling all Cholangiocarcinoma/bile duct cancer Patients in Cancer

My name is Andrea Parrella. I am a patient at the Mayo Clinc in Arizona as well as a volunteer patient advocate for the Cholangiocarcinoma Foundation.

Growing up in a big Italian family outside of Boston, I remember my dad's mantra to us kids was (and still is!) "no man is an island." Many years later, I learned that he had taken these words from John Donne and that rest of the quote reads, "every man is a piece of the continent, a part of the main." Nowhere has this become more true for me than in our Cholangiocarcinoma Continent! None among us is truly self-sufficient. We must all rely on the company and comfort of each other, in order to thrive. So many people live with us on this continent! — family, friends, you-my fellow warriors, oncologists, researchers, pharmaceutical companies, Cholangiocarcinoma Foundation staff and fellow volunteers. When I was diagnosed at age 45, I was told that the best I could hope for was another 3 months to a year "tops" to live. This week, 3 years and 8 months (in counting) from that life-changing day, I will be celebrating my 49th birthday. My birthday wish is that between now and December 22nd, 49 other Cholangiocarcinoma patients/survivors take 5 minutes out of your day to join me in signing up to have your health records sent to Citizen Health Data, checking the box to give them permission to share your records with the Cholangiocarcinoma Patient Registry—this small but profound act will lead us one step closer to a cure. Once you've signed up, please reply to this post telling me you've participated in helping me to make my birthday wish come true! Love to and peace to all of you. Click on the following link for more information about this wonderful opportunity for us to not only have all our health records in one place and in our control but also in the process to help further research into treatments and a search for a cure. Here's the link: https://cholangiocarcinoma.org/giving-thanks-by-giving-back

Oct 25, 2019 · Bile Duct Cancer in Podcasts

Also, see my Oct 2nd post—Cholangiocarcinoma.org is THE SITE. There is a discussion board you can join. You can email them to ask for a patient mentor or to volunteer to mentor others. You will see when you explore the website that more than 1 Mayo Oncologist is on the Medical Advisory Board. It is legit! There is also a conference in April (2 days) in Utah that brings together patients, caregivers, oncologists, researchers, etc. — Mayo researchers are always among the presenters. See info on their website. (cholangiocarcinoma.org)

Oct 25, 2019 · Bile Duct Cancer in Podcasts

Jerry–See my 10/2 post. There is a closed FB site. Go to FB and type into the search bar "Cholangiocarcinoma Warriors-Patients Only." Send a message to the administrators answering the questions and when sh confirms you are a patient, she will add you to the group.

Oct 2, 2019 · Bile Duct Cancer in Podcasts

Thank you for this informative video about bile duct cancer/cholangiocarcioma. I urge anyone who has been diagnosed with this cancer–regardless of the staging—to visit the link below to The Cholangiocarcinmoma Foudation. The foundation is THE place to find out about the developments in research, targeted and immunotherapy treatments, surgery, transplant, etc… that Dr. Peterson discusses in this podcast. For those of you who live and are treated in Arizona, there are two of us—Michael and myself(Andrea)—who volunteer with The Cholangiocarcinoma Foundation as patient mentors. We are also patients here at Mayo Phoenix. Contact the foundation and ask to be connected to one of us. We know many, many patients who are doing well on innovative treatments. The Mayo Clinic oncologists, surgeons, and researchers are some of the most well known leaders in breakthrough therapies/treatments. The Foundation has a conference every year in Salt Lake which brings together bile duct patients, caregivers, oncologists, researchers, etc. from all over the world. All the information about how to attend this conference is on the Foundation website below. I am 48 years old and have been living with advanced unresectable bile duct cancer for 3 1/2 years now and thanks to a drug trial at the Mayo which targets my cancer mutation (FGFR2)– I have had relatively stable disease for almost 2 1/2 years(in counting :), I am able to manage the drug's side effects and at the same time live a high quality of life. Connecting with other patients going through the same diagnosis through the foundation and at their yearly conference has been a crucial part of my non-medical "treatment"—it's given me hope and a supportive community to connect with. Join us!


Aug 17, 2019 · Exercise during chemo in Cancer: Managing Symptoms

I just signed up for a live strong program at the YMCA in scottsdale. It begins 9/17 and runs 12 weeks. Tuesdays and thursdays 12-1pm. If you’re interested, email jack White at jackdanawhite@cox.net. To get more details. He’s the trainer and this is his 7th time running the 12 week program at the Y. Hope to see some of you there!

Feb 7, 2019 · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

Jerry-if you are interested in getting a second opinion in Texas, Dr. Miland Javle at MD Anderson in Houston is one of the best known oncologists in the country for treating Cholangiocarcinoma.

Feb 6, 2019 · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

I’m unfamiliar with treatments available post ptransplant. However, There are many patients connected with the Cholangiocarcinoma Foundation who have undergone transplants. I strongly encourage you to call the Cholangiocarcinoma Foundation and request to be assigned to a patient mentor and assigned to someone in the cholangioconnect program. They will match you up with people who have also gone through a transplant and can help connect you to resources that are specific to post transplant treatments . At which Mayo location are you being treated? At the mayo clinic here in Phoenix, you can request to see a social worker ( I recommend Elizabeth Matthews she is helpful and knowledgeable about how the Mayo works) To help you to re-open/repair communication between you and your healthcare team. If you are at another location, maybe this site’s monitor can make a recommendation for who the experienced social workers are at your location ? Furthermore, It is standard for many patients to get second opinions at 2 different major cancer centers at transition times in their treatment plans. While all the major centers have similar transplant protocols, different centers might offer different clinical trials/treatments for patients post-transplant. You are doing the right thing by staying on top of this now and searching for answers. I have recently just discovered this site and it is wonderful. However, this is such a specialized area even within colangiocarcinoma and again I urge you to contact the Foundation as they know all the transplant specialists and what is offered, including, of course, what is available at the different locations of the Mayo Clinic . I’ve learned that as a patient, it is my job to be my own advocate. Once you contact the foundation please let us know how it goes as maybe there will be others who come to the site who have the same questions.