Newly diagnosed
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Hi Formydad,
Welcome to the site. Sorry that you had to find us all here but I’m glad that you have joined in with us as you’ve come to the best place for support and help, and I know for sure that you will get tons of both from everyone here.
Sorry to hear about your dad. I can relate to how you feel right now as my dad went through this as well. But it sounds like your dad has a game plane in place and that is good to hear. I hope that his chemo goes well and please keep us updated on how that goes for him, my fingers are crossed for him. And thanks for letting us know what trial he is on too.
Staying positive is good and a good but reaistic attitude will help you all here. As you say, anything can happen and who knows what lies ahead. And I like what you say about your brothers here, if they are all doom and gloom then not speaking with them about your dad sounds okay to me. I know that your mum doesn’t want to worry you and that is fair enough. But maybe you could speak with her and tell her that you would prefer that she tell you everything as to what is going on with your dad. How is your dad with talking about stuff with you? Some may find it hard but my dad was able to discuss eberything with me.
I know that all of thsi will come as such a shock to you. But stay positive and know that we are all here for you. We know what you are going through and we care,
Best wishes to you and your dad,
Gavin
ForMyDad: A warm welcome. I believe that you are talking about this Phase I study: https://www.umms.med.umich.edu/umclinicalstudies/detail_pub_study.do?show=YES&id=5229&TYPE=
Patients enrolled in clinical trials are watched closely however; if your Mom notices anything that she feels uncomfortable with, then she should not hesitate and call the coordinator immediately.
I don’t believe that anyone on this site is undergoing this particular clinical trial, but if there is, then I hope for that person to share more information with us.
If your parents are inclined to do so, they can request to be put in touch with one or more of the other patients enrolled in this trial. Please stay positive and please keep us posted.
Hugs,
MarionDear ForMyDad, welcome to our extraordinary family but sorry you had to join us. It sounds like all the right things are being done. We understand how you feel but now that your Dad has a game plan eventually the fright turns to fight plus attitude and and strength are so very important. Perhaps you could let your Mom know that you WANT and NEED to know what is happening as it is extremely hard to be so far away and not know what is happening. Or, perhaps you could get her to give the ONC permission to let you know. Staying positive is the best, or as I like to say, realistically optimistic. You have come to the right place and please keep us posted, we truly care.
Hello all!
I can’t same I’m glad to be here but I can say I’m glad this site is here. My dad was initially diagnosed with liver cancer but after more tests they found he has bile duct cancer too. I don’t know much of the details (compared to other posts I’ve read) other than he has started chemo today. He started a clinical trial at the University of Michigan. His port was put in on Tuesday and had 7 hours of partially chemo and anti-nausea medicine today. He will take home a fanny pack with chemo for the next 48 hours and then a visiting nurse will come on Saturday to take chemo out of port. He will have chemo every other Thursday with blood work and Dr. visits in between.
He is a healthy man, 67 years of age. There are no other health issues other than high blood pressure. He was a firefighter for 25 years and owned his own electrical company for many years too. He has four children and has been married to my mother for 40 years. This has been a shock to all of us. His initial signs were loss of appetite, weight loss and then he had severe gas-like pains. All of these symptoms started about 2 months ago. His general doctor (who he has seen for years) had suggested all the test to look for this cancer. They started at Beaumont Hospital in Michigan but were unhappy. They moved to U of M and are very pleased.
I believe this is the info for the clinical trial…
IRB Number: HUM00035756
Title: adults with advanced or metastatic biliary cancer
Abbreviated Title: UMCC 2009.119
Condition Category: Cancer – Gastrointestinal
Purpose: Characterize the safety profile of ARRY-438162, determine the maximum tolerated dose of ARRY-438162 through review of all available Cycle 1 data and the assessment of dose-limiting toxicities
Study Description: Characterize the safety profile of ARRY-438162, determine the maximum tolerated dose of ARRY-438162 through review of all available Cycle 1 data and the assessment of dose-limiting toxicities, characterize the plasma harmacokinetics of ARRY-438162 and a metabolite AR00426032
Eligibility:Age Range: From 18 To 100 years
Gender:Both Female and Male
Ethnicity: All
Race: All
Smoking: Both Smoking and No-Smoking
Medication: No Restriction
This study is seeking: Patient with Specific Condition
Handedness:Either
adults with advanced cancer
advanced GI cancer
advanced solid tumors
biliary cancer
eye exam
metastatic biliary cancer
muscle biopsy
tumor sampleTags: Advanced , Biliary , Cancer , Gastrointestinal
Location of Study Visits: Ann Arbor, MI
Principal Investigator: Zalupski,Mark MI live in Nevada with my family, including my sister. My two brothers reside in MI (with their families) along with my mother and father. Needless to say, it is difficult to get information sometimes. My mom is very positive and doesn’t want to worry us, my brothers are doom and gloom, so I prefer not to speak with them. My outlook is to stay positive. Anything can happen, especially with prayer, hope, love and support.
I appreciate the support here. If there is anything I need to add or have my mother ask while she is at the doctor please let me know. Thank you for taking the time to read our journey!
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