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Andrea

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Parrella

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Fri, Oct 25 10:25am · 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)

Fri, Oct 25 10:21am · 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.

Wed, Oct 2 3:55pm · 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!

https://cholangiocarcinoma.org

Sat, Aug 17 12:34pm · 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!

Sun, Feb 17 10:43pm · Mayo Clinic AZ and FL Living-with-Cancer Patient Symposium in Cancer

I am registered for the 1 day Mayo Clinic Living-with-cancer symposium. It is on Saturday, February 23rd at the JW Marriott at Desert Ridge. It is complimentary for Mayo patients and caregivers. I registered back in Novermber when it was recommended to me by a nurse at Mayo. Has anyone else been to one in prior years? Maybe the moderators of this site can post some details and let everyone know if there is still time to register for those who are interested in attending? Thanks.

Thu, Feb 7 9:58am · 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.

Wed, Feb 6 8:52am · 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.

Mon, Feb 4 10:29am · Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? in Cancer

This is my first time posted on this discussion board. I am 48 years old and have been living with stage 4 unresectable cholangiocarcinoma in Phoenix, Arizona for almost 3 years now. I am also a volunteer patient advocate for the The Cholangiocarcinoma Foundation, the only Patient Advocacy organization for this disease in the U.S. I just returned from our annual conference in Salt Lake City where for three days, 480 clinicians, researchers, drug company representatives, patients, and caregivers, learned all about the newest research and treatments. I urge all of you who aren't aware of this organization to check it out at https://cholangiocarcinoma.org. This site has a wealth of knowledge—you can read patient stories, watch all the presentations from the prior years' conferences (this year's will be posted in the next couple of weeks), and learn about clinical trials. The Mayo Clinic has a strong presence in this organization. This year, Lewis Roberts, a researcher at the Mayo in Rochester was the conference co-chair. My oncologist, Mitesh Borad(at Mayo Phoenix) gave a presentation as well and is one of the leading researchers in Cholangiocarcinoma in the country. The foundation has trained patient mentors, like myself throughout the country who can help point you to the right resources. You can call the foundation directly at (888) 936-6731 or feel free to post a question and I can answer any questions you may about how the organization can assist you. Have hope, everyone—there are many brilliant and caring minds and hearts working hard to find a cure as well as to bring to market new treatments that can improve our quality of life by keeping our disease stable. Since you are all being treated at one of the Mayo Clinic locations, you will understand the importance of Molecular profiling. If not, I urge you to view this 2 minute animated video just released by the foundation: https://www.youtube.com/watch?v=x8GV9TMXoDY When my tumor tissue was sent out by the Mayo for testing —(molecular profiling/genomic profiling/next generation sequencing….all mean the same thing), it was found to have the FGFR2 mutation. I had previously had the standard gem/cis chemo regimen followed by a y90(local radioembolization to the liver). But the knowledge of my tumor's specific mutation led me to being eligible for a drug trial at the Mayo here in Phoenix which has kept my tumor stable for the last 18 months with very manageable side effects. While I know that eventually, the cancer will find a way to "outsmart" the drug, because I keep up to date with all the new research and trials, I already have a plan B and C lined up. I have my scans at the Mayo later this morning. Wish me luck! Sending you all hope and peace today. —Andrea