Our journey has begun……..
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Tim
Welcome. We to are Michigan residents, lower. We got our second opnion at the U of M. They seemed pretty knowledgable and were on track with everyone else as far as treatment suggestions. My sister was diagnosed in Nov. 0f 2009 and is still here doing second rounds with chemo. Good Luck!
JackieTim,
I’m weighing in late but a very warm welcome to you! You will find a wealth of knowledge, compassion, empathy and the most amazing people in the world here on this site!
We’re all here for you. Take a deep breath and get ready for the fight!
Here is a wonderful link for all of the confusing lab tests you’re going to become familar with….
http://www.labtestsonline.org/
It’s a great source of information and very user friendly.
I’m sending hugs and prayers for strength.
Pam
Thank You All! The love and support I feel already has brought tears to my eyes.
Gavin and Marion, thank you for the links to the DR’s and Hospitals… that is exactly what I was looking for!
Margaret, we live in Sault Ste. Marie, Michigan, on the Western End of the Upper Peninsula, so Green Bay is not that far away….. thank you for sharing, and I am so happy for you and your husband!
Cathy, story’s like yours and Margaret’s and so many others I have read, warm my heart, gives me hope. Thank you for sharing and the information.
I spend all day and night at work, going through the motions while only being able to think about this damn disease! By the time I get home I am mentally warn out and only thinking the worst. Then I come back to this site, and the hope returns.
My Mom is a fighter, and her Faith is nothing short of amazing! She will fight this head on, and the family will be with her every step of the way, and this site, all of you will be there with us providing the support we need.
Thank You to all of you, and God Bless. Each and everyone of you are in my nightly prayers now!
Tim
Hi Tim, and like everyone else I am sorry you had to find us. I am a CC survivor, and found it so dejavu when you said “12 hours ago”, I too can tell you the moment my life changed forever, 3:00 July 31, 2008. I am alive because of a liver transplant and have told my story at organ donation events and always say “I was just like you on July 30, 2008”.
I am alive because of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I never needed another opinion because I was immediately given hope. Dr. Chapman even told me what to google!!! Just an amazing “human being”. He saved my life twice, I had two liver transpants. I will be 2 years cancer free next week, thanks to his trial. Please read my story at thetelegraph.com under christmas miracle, it is so full of hope. I was only 52 when diagnosed with inoperable CC. I am not the only fan of Dr. Chapman on this site, even those with less positive outcomes say only good things about him, he is a very rare man and doctor.
Lots of prayers-CathyTim:
Baycare Aurora in Green Bay is where my husband Tom is being treated for his CC. After the VA Oncologist told him to go home and that he had 6 months, we met with Dr. Nancy Davis and Dr. David Rhoady and between radiation and chemo he is still here some 20 months later. Not sure which town in Northern Michigian you live in, or how far Green Bay would be for you, but at least these doctors gave us some hope and were willing to take a chance!
Tom had his original liver resection surgery at the VA hospital in Milwaukee.
Your Mom has prayers coming her way from Green Bay!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Tim,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you have joined in with us here as you are most certainly not alone here. We know how you feel and what you are going through, and if we can help in any way at all then we will. So please, if you have any questions at all then ask away and we will all do what we can to help in answering them.
Like you, I had never heard of CC until my dad was diagnosed with inoperable CC back in 2008. And like you also, I started searching the internet immediately and came here and that was the best thing that I could have done at the time. Yes the feeling of having your world turned upside down is one that we can all relate to, but I can tell you that you will all start to feel a lot better once their is a treatment plan in place for your mum and then the fightback will begin.
I agree with what has been said about seeking other opinions from specialist centres/doctors who have experience in treating patients with CC, and the link that Marion has given you is great as it was created by the members here. I don’t know if you have seen this link but it may help as well. It is a list of treatment centres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
From what you have said, it sounds like you all have a great and positive attitude and this will carry you a long way here. I hope that you will keep coming back here as we know what you are going through and we care.
My best wishes to you and your mum,
Gavin
Dear Tim – How wonderful your family has you to jump in with both feet and get all the information (and support) that you can. You are truly amazing and attitude plays a HUGE part in this process. You are right that you are now among people who know and understand – a rare group of caring, loving, supportive people have just become part of your family. Blessings on this journey. Susan
Hello Tim …Our Peter once said: “welcome to the club no one wants to belong to” and I would like to add: “and are so glad to have found.”
Tim, I am quite familiar with Dr. Ben Josef at the University of Michigan. He might be a good contact person for you to reach out to. Here is the link:
http://www2.med.umich.edu/healthcenters/provider_profile.cfm?individual_id=109849
Additionally, this is our member established link to physicians and centers. You might find some helpful information.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
You are doing everything right, Tim. By reaching out to others and informing yourself about this disease, you will become an informed advocate. And, that is exactly what your Mom needs.
All my best wishes,
MarionThanks Tim. Think I would be headed in the direction of another opinion on the treatment. It’s late now but I know you will get some more answers tomorrow!
Hello Lainy….. My Mothers CC is located in the right quadrant of her Liver. They cannot tell exactly after the CT, Pet, MRI, and any other scan you can think of, if it has started to move into another part of the liver, or just exactly how big it is. So for that reason our ONC could not give a definite stage, except to say it was most likely stage 2, possible starting to move into a stage 3 but could not know for sure. The good news we received is that it doesn’t look like it has started to spread through the body or leave the liver yet.
Hello, Tim and welcome to our wonderful family but sorry you had to find us. You are doing all the right things like researching as knowledge is very powerful in fighting CC. Where is your Mother’s CC located and did the ONC give you a prognosis/stage. I know that others will be coming along to suggest their favorite treatment centers but until then we have a couple of rules. We don’t listen to statistics, we don’t take NO for an answer, we keep up a great attitude, and we go for 2nd and 3rd opinions until our gut tells us we have hit the right place. And one more very important thing, we try to be realistically optimistic. I think you have a good hold on things. Oh, at the top of our page is a search engine and you can type anything word in there and posts will appear on that subject. You have come to the right place as our members are the most caring, thoughtful and loving people from all over the World. Please keep us posted on your Mother.
For being such a rare form of cancer I can’t believe I was able to find a site such as this dedicated to CC. We just found out today that my Mother has been diagnosed with CC. Needless to say, many hours have already been spent searching the internet trying to find answers and looking for good news. Unfortunately it seems with this cancer there is not allot of that out there. At least until I found this site!
I can’t even begin to explain how our families world has been turned upside down in a matter of days. But then again, I know I am now among people who know and understand.
We live in a small Northern Michigan town where our Hospital is not equipped to deal with this type of cancer, at least nothing more than administering chemo or radiation. We already have our first visit to University of Michigan Hospital set for next Friday. We are very blessed to have a wonderful hospital like this in our own state. But I have already been looking at other hospitals just in case U of M tells us they can’t or won’t operate. We will not take NO for an answer. I have read so many amazing stories on here already of people who did not take NO for an answer and kept searching. So I was hoping if any of you could share which hospitals and DR’s you had success with so I can compile my list of places and DR’s to check out if needed. Also, if any could share alternative medicines you have had success with too!
12 hours ago I had never heard of Cholangiocarcinoma, now it’s all I can think about. For a group of people I have never met or talked to before, you have all just become my new support family and I thank you from the bottom of my heart for being here and look to learn and grow from your experiences. Then maybe someday I can turn around and share what I have learned from this unwanted journey life has put our family on.
Thank you in advance for any and all help you will provide!
Sincerely,
Tim
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