I’m volunteering my time to help CC patients conduct research.
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- This topic has 13 replies, 8 voices, and was last updated 9 years, 5 months ago by mbachini.
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April 16, 2015 at 4:00 pm #87477mbachiniModerator
Dear Andy,
I want to commend you for reaching out to help others. You first reached out to me in February, and I remember so vividly how scared, overwhelmed and desperate you were for answers and help in this situation, as so many of us are. I remember telling you that I was happy to talk and help in anyway I can because I remember how hard and overwhelming it was for me and my family in the beginning. I wanted to pay it forward, and I see that you want to help others as well.
I have seen first hand the benefits of this discussion board, benefits of making connections with other survivors, patients and care givers. There is such strength in numbers. We are a part of a family that is connected in ways only we can understand.
Andy, I am so proud of you for reaching out to others both to receive help and now to give help! There is healing in helping others. Thank you so much for wanting to share your knowledge. All my best to you and Sarah, you are always in my prayers!
MelindaApril 13, 2015 at 2:16 pm #87476sherriMemberAndy
I am sorry to hear about your wife. You are so kind to offer help to others while having to help your wife. I was diagnosed in Dec. 2014. I am stage IV and in the middle of second chemo combo. Gem/cis didn’t work so trying something else. If this doesn’t work I will be going to MD Anderson to see what they offer. I would like to hear what they have suggested to your wife and your opinion of Anderson if you feel like sharing.This site has been so helpful to me in trying to figure out what I need to do. I send lots of prayers and good thoughts your way
Sherri
April 3, 2015 at 4:07 pm #87475dukenukemMemberNCT02187783
Official Title: Modular Phase II Study to Link Targeted Therapy to Patients With Pathway Activated Tumors: Module 8 – LEE011 for Patients With CDK4/6 Pathway Activated Tumors
I met with Dr. Estfan once when Dr. Sohal was on vacation. I agree, he is very good. He’s honest without being a downer. If it weren’t for the fact that Dr. Sohal is running the trial, I would welcome Dr. Estfan as my onc.
BTW, I’m in Madison, Lake County, about six miles from Lake Erie.
Duke
April 3, 2015 at 6:30 am #87474iowagirlMemberAndy….welcome to the boards. You are one very astounding man to take time during this difficult time with your wife’s treatment to offer to help other people in the same situation. Good luck to you at MD Anderson and your meeting with Dr. Javle. Everything I hear about him is really good.
Julie T.
April 3, 2015 at 1:54 am #87473andy12SpectatorDr. Bassam Estfan is my wife’s oncologist. We’ve been very happy with him. He’s proactive, patient, he listens and most importantly, he communicates. Duke – what trial are you trying to enter?
April 3, 2015 at 1:47 am #87472dukenukemMemberAndy –
Who did you see at he Cleveland Clinic?
I am trying to get into a trial administered by Dr. Sohal. Right now platelets are too low. Getting them rechecked Monday.
Duke
April 3, 2015 at 1:44 am #87471lainySpectatorThanks for that, Andy and I am so sorry about your wife but glad it brought you here and to our site. As you are probably aware Dr. Javle is one of our favorites and your wife will be in good hands at MDA. Like I said, I cannot help with treatment questions like yours as my husband had a Whipple which bought him 5 years but they did not do chemo. He DID have Cyber Knife when the CC returned 3 years after the Whipple and that was like a miracle that bought him another 2 years. So glad you are going to MDA. You WILL find HOPE and MIRACLES on this CC site as well and you are an excellent advocate for your wife. Wishing you all the best and looking forward to hearing more as you progress.
April 3, 2015 at 1:31 am #87470andy12SpectatorLainy, Matt – we are a U.S. State Department family that was posted in Beijing, China when we found out my wife had a large mass on her liver. Within a couple of days we were out of China on a plane for the Cleveland Clinic to get her treatment. She was diagnosed with intrahepatic cholangiocarcinoma in early February. Unfortunately, resection and transplant surgery are not possible so she is receiving a steady diet of gemzar and oxaliplatin. Foundation One results returned showing she exhibits the BRAF gene mutation so we’re considering joining the clinical trial using combination therapy of Dabrafenib and Trametinib – drugs typically used for melanoma patients but have shown much promise for CC patients (NCT 02034110). I’ve only been able to find two other CC patients who have tried this clinical trial. BRAF is very rare amongst chlolangiocarcinoma – less that 5% of patients have it. This probably explains why it’s so hard to find people to discuss the treatment. We are headed to MD Anderson next week for an appointment with Dr. Javle. I’ve been pounding the internet pavement since the day my wife was diagnosed. Not everyone has the time, energy, or ability to research the internet so I figured I would try to bridge that gap by helping people connect with fellow patients that can answer their questions.
April 2, 2015 at 8:28 pm #87469mattreidySpectatorThat’s fantastic Andy – It sounds like you really know your way around. What trial was your wife considering?
Andy12 wrote:Sure Matt. I find the best way to make decisions is by talking to people who have already gone down that road. I’m pretty active in that I reach out to people via a combination of emails, phone calls, and Facebook. For example, my wife is considering joining a particular clinical trial and we had some questions about how it works. I scoured Facebook to find people talking about the trial then instantly messaged them. Within a few minutes I was on the phone with another CC patient who spent an hour with me on the phone telling me about his experience with this particular trial. My wife and I are now armed with more information to base our decision. All this was done in a matter of a few minutes because I’m willing to reach out and make phone calls. Not everyone is comfortable doing that. Perhaps I could help people do those kinds of things.April 2, 2015 at 8:19 pm #87468lainySpectatorHi Andy and welcome to our elite family. We are a curious lot and find we learn so much from each other. Can you tell us more about your wife and what her treatment is and where she is being treated? Looking forward to hearing from you.
April 2, 2015 at 7:59 pm #87467andy12SpectatorSure Matt. I find the best way to make decisions is by talking to people who have already gone down that road. I’m pretty active in that I reach out to people via a combination of emails, phone calls, and Facebook. For example, my wife is considering joining a particular clinical trial and we had some questions about how it works. I scoured Facebook to find people talking about the trial then instantly messaged them. Within a few minutes I was on the phone with another CC patient who spent an hour with me on the phone telling me about his experience with this particular trial. My wife and I are now armed with more information to base our decision. All this was done in a matter of a few minutes because I’m willing to reach out and make phone calls. Not everyone is comfortable doing that. Perhaps I could help people do those kinds of things.
April 2, 2015 at 7:35 pm #87466mattreidySpectatorWelcome Andy! I’d be interested to know more about your wife’s journey and the type of information you’ve found to be most useful so that others with similar journeys can benefit. Would you mind sharing?
April 2, 2015 at 6:12 pm #87465marionsModeratorYou are on, dear Andy. Please contact me marion.schwartz@cholangiocarcinoma.org
April 2, 2015 at 5:24 pm #11101andy12SpectatorWe joined the cholangiocarcinoma community once my wife was diagnosed in early February 2015. The learning curve has been steep and the work never ending.
Once I realized how time consuming the research was going to be I began to enlist the help of friends and family to scour the internet looking for treatments, clinical trials, doctors, CC survivors, and mentors. The information poured in and we were able to make faster and more informed decisions about my wife’s treatment because of their help.
I’m constantly painting the Cholangiocarcinoma Foundation “listening” to peoples’ conversations. We, personally, have benefited greatly from other peoples’ knowledge and I think it’s time for me to pay it back.
I’m offering my time to anyone in this community who needs help conducting their research. For some, it can be overwhelming to research the message boards, conduct internet searches, review Facebook conversations or even make phone calls. For others, they may just not have an abundance of time.
Contact me here if you want to take me up on my offer. Thanks, Andy12
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