22 year old son just diagnosed
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Wensdi,
Please tell Taylor to keep up the positive attitude, it helps with this battle! Please don’t give up hope and keep seeking as much information as you can. Please lean on us here…we are all here to help and support in any way we can. Sending hugs and prayers your way.
MelindaI am so sorry you are going through this, as a Mom this has to be so hard. I think the above comments are great. Please know our family will be praying for Taylor, you and your family.
Hugs
LisaTaylor’s positive attitude will go a long way. He is young and that is also in his favor. It sounds like you are doing all you can for him and I am glad he is getting some advice and treatment. I’m not sure about the clinical trials, but it would be something to look into. Update us and let us know how he is doing. My thoughts and prayers are with you all and especially Taylor.
Love & Hugs,
DarlaThank you all…Taylor has large rumors all over his liver,a few on the bottom of lungs and pancreas numerous cells.. We are told surgery not possible, do to so many, everywhere..
ucla ,originally diagnosed him, due to insurance we are on our 2nd round of chemo at Irvine,in Orange California… I just was able to get him on full coverage with kaiser permenente but I understand we have to finish out his treatment here? He also takes oral chemo at home 2 times a day.
I understand there is a clininical trial in Texas, that might be a good fit?Taylor is so positive, dealing with all of this at such a young age! He basically says he will learn from this and grow!!!’
Thank you all…it’s incredibe how many prayers and support have been coming in for my dear, son.
Wendsy, I’m so sorry to hear that someone so young as your son has this awful cancer and that you are having to deal with insurance issues to boot. I don’t have anything much to add to some of the really good comments above. I just wanted to welcome you here and to let you know that you have found a good place for info, help and comfort from people who have gone through this themselves, either as a caregiver or patient. I am a patient, myself, and have experienced a lot, but there are others on these boards who know so much more. Right now, you just need to get your son, “somewhere” where the doctors are familiar with this cancer ….where they will treat him. Second opinions are often needed….and sometimes 2nd, 3rd and 4th opinions. Insurance or not, your son deserves to be seen and treated.
Dear Wensdi, I am so sorry to hear about your son’s diagnosis. This is a great forum for advice and support. I hope that you will receive comfort and a variety of ideas here. While UCI is a great facility, you may want to also look at City of Hope in Duarte, CA. It’s in the San Gabriel Valley. I know that they do take patients that do not have insurance. They have been incredible in treating my husband’s cc and everyone that works/volunteers there is so positive and welcoming. City of Hope also has Dr. Yuman Fong as the chief of surgery. He is internationally known and very well respected. Dr. Singh is my husband’s surgeon and we could not be more pleased. He is so reassuring and patient with all of our questions. He was the chief of surgery until Dr. Fong arrived from Sloan Kettering in NY.
Please check into getting a second opinion there. You wont be disappointed by their compassion and knowledge of cc and all cancers.
I will include your son and you in my prayers and hope that you will continue to reach out to the many wonderful people in this forum.
God Bless,
MelindaHi Wensdi,
Welcome to the site, but so sorry that you have to be here. And I am real sorry to hear about Taylor. I wish that I could chime in with some thoughts here that would be of help and use to you but I think that the others have said it best. I would add that please do learn as much as you can about CC as the better informed you are the better equipped you will be when it comes to helping your son. Information is power so please learn as much as you can.
I can only imagine how stressful and tough this time is for you both right now. Please know that we are all here for you and will help as best as we can. Do keep coming back here. You are not alone in this, we are here with you.
Hugs,
Gavin
Windi….you may also take a closer look at information we provide.
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/Most of all, dear Windi, don’t give up on hope. Taylor’s young age is very much in his favor; his resilience is built in.
Hugs,
MarionBased on personal experience, you MUST find an oncologist who has a great deal of current knowledge on the treatment of CCA. I started with a caring onc but she has exhausted her limited knowledge and referred me to another onc. The first onc is part of a cancer center that has seen a total of four CCA patients in three years. The second onc is personally treating 15-20 CCA patients now. Do not settle merely for enthusiasm and caring. Knowledge is the only effective tool in treatment of CCA. Make sure the onc explains everything clearly. Keep asking questions until you understand. Keep notes of what you were told and when and why.
Forget the published numbers. Attitude is so important in the treatment. Taylor’s attitude, your attitude, the attitudes of family and friends. Plain and simple, all of you are fighting for your son’s life. Your best is all you can do. Make sure you get the best medical team to fight on your side.
Treat every day as a new miracle. Live your lives, don’t just settle for mere existence.
Duke
Windi…..I am so sorry to hear that UCLA has released him due to inability to pay. Taylor may very well qualify for Medical or Medicare and as far as I know UC Irvine Health has charity care policies as well. Please share with us the outcome of your visit with the oncologist.
This is supposed to be a disease of the elderly and yet we find an increasing number of young people diagnosed. Only last year, Christopher Wilkes, Los Angeles, a 12 year old boy, had this cancer. It is heartbreaking.
Windi, I have e-mailed you. Please check your inbox.
Hugs,
MarionHello Wensdi and welcome to our group. First of all, oh my gosh, this must be so overwhelming for you. Even though CC is a rare disorder, it comes as an even greater shock when the patient is so young. The members of this board are exceptionally caring and knowledgeable. This, in my opinion, truly is the most informative source you can look to for information and guidance. I know it was for me when my husband was diagnosed nearly a year ago.
It would be helpful if you could provide some information about your son’s diagnosis. Where is the CC located, what were his presenting symptoms, how was it diagnosed and by whom?
I’m sure you will receive some very helpful information from our members about how to proceed, nearest medical centers with expertise in CC, and ideas for seeking treatment when medical insurance is not available. The doctors that do not specialize in treating CC tend to use a palliative, “just deal with it” approach and may not even be aware that there are more and more effective treatments surfacing all the time. It is really important to seek a knowledgeable doctor that treats many cases of CC. All my best to you and your son.
Debbie
(Note: This is also posted in the General Discussion thread)
Hi Taylor’s mom,
Nice to meet you, but sorry it has to be here. I can’t be of much help in your sons situation, but wanted to give you a warm welcome. I’m sure others will be on board soon to welcome you and hopefully have some suggestions. I know several live in California so can possibly send you in the right direction. Yes, it is scary, but know that you will get a lot of help, support and information on this site. You have definitely found the best place to be when dealing with this rare disease. Let us know what the new oncologist has to say. Wishing you and your son the best on your journey.
Hugs,
DarlaMy son only 22 years old just diagnosed, stage 4, given 7-12 months to live!!
This is the scarest thing ever!!!
We live in Orange county,Irvine., California
He was diagnosed at Ucla medical center in Los angeles, diagnosed and 2 rounds of chemo.He has no insurance!!!!!!!
Tomorrow we meet a new oncologist at uci medical center in Orange,ca…
Thanks for any advice Anyone can give!!!!
Wensdi aka Taylor’s mom
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