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Hi Suzanne, I live in Mooresville, Indiana. We are neighbors. My mom was diagnosed in October 2006. She went to IU. We had a great experience. Her surgeon was Dr. Nakeeb. Her oncologist was Dr. Romnee Clark. Unfortunately, Mom passed away in September 2008. But, please don’t let that discourage you. I remember how hard it was for me when Mom was fighting, and I would hear the stories of others who passed. There are MANY survivors on the board! I know that you are on an emotional roller coaster right now. This is a touch journey. I have two small children (7 and 1), so I know the journey takes a whole new road when you have little people who love their grandparents. Please feel free to e mail me Aleaalexander@yahoo.com.
AmyHi Suzanne, Cholangiocarcinoma is often unpredictable. Yes, it can move very fast but also it has been known to move slowly. Doug was diagnosed with cancer in October last year, cc in December, he had 8 rounds of chemo ending in May. He has had no progression of disease since February. His cancer is all through his liver, spine, ribs, pelvis, lymph system; so quite extensive. So we enjoy stable and live one day at a time. He is doing much better than expected. Sending postive thoughts that the chemo works. There have been people able to get resection after chemo when the cancer is just in the liver. Hang in there, stay positive, all the best to you. Nancy
Suzanne,
I live just north of Indy and had my resection at IU Med. My doc was Mary Mallucio. She was fabulous and did surgery three weeks after I met her. I was lucky, the tumor was only in one lobe of my liver, but she is very experienced in CC and I had complete faith in her. I am 4 1/2 years out from surgery and still having clear scans. I am sure all of the doc at IU Med are great, but I loved mine. I hope everything goes well for your dad. I am so sorry you are all going thru this. It is so terrifying.
People on this forum are wonderful. Please feel free to join in and ask all the questions that you can think of.
hugs,
SueWell – the Reunion is over and was very emotional to say “good-bye/see you next year” to our family from FL.
Reading other posts and statistics, I understand how fast this horrible thing moves and am completely overwhelmed. I really just want life to be normal again, but I’m starting to realize that “this is my new normal”.
Suzanne, sorry you had to find us.
My suggestion, would be to find the best surgeon you can, who has lots of CC experience. They are typically only found at major cancer centers, and not all of them either. I would consider convenience way down on the list of priorities here, since there’s only about 2000 new cases in the US per year, and even the major cancer centers don’t see a whole lot of cases in a year.
I ended up at NY Presbyterian in NYC with a brilliant and compassionate surgeon, Dr. Tomoaki Kato, who did a left hepatic lobe resection on me in May of 2009. BTW, I live in MD, nowhere near NYC. If your Dad is a resection candidate, I would think you would want that done very soon, since time is not your friend with CC. There’s a great list of hospitals and doctors in the link below my name, besides other resources on this site.
My understanding is that surgery is the only ‘cure’ for CC.Good luck in finding great care for you Dad.
hi suzanne,
my mother was 65 when she was diagnosed. we did recection within 2 weeks of diagnosis, but 2 out of 27 lymph nodes were positive, so we went from itching to stage 4 cholangiocarcinoma…a bit overwhelming to comprehend. this is a wonderful website with tons of information and warm, genuine people who listen without judging and who are in their in your worst hour. It is not a group I ever thought I would need, but am forever thankful to be apart of.
sending you tons of love,
roni
ronidinkes@yahoo.com
and I am on facebook as well.Dear Suzanne, just want to say that you may be surprised at what a 2nd opinion can do. And now that we are all family, you can expect at least 500 more of us next year for the Brickyard 400.
Thank you all for your warm welcome into this Loving, yet unfortuante family to have. I am blessed to have a community/family like all of you.
@Gavin – Gemcitabine/Cisplatin combination sounds correct. I have a folder @ home with the info on it, just not here (I’m @ work, shh).@ Nancy – the doctor’s @ IU Hospital here in Indianapolis have explained to us that transplant would not be possible. We really like Dc. Helft (our oncologist) and he said, once the “seeds” have been planted that after the long recovery from a transplant the chances the CC seeds will have alredy strated to take over his new liver are pretty high.
We are getting ready for the Brickyard 400 – the Nascar race here in Speedway for any fans – and this has become a big family reunion for my dad’s family for the last 17 years. His brother from FL come up every year with his family (2 sons, daughter-in-laws and 4 grand children) along with the entire Guthridge clan that is local (2 sistters + their families). It’s what I coined last year the “All Guthridge, All The Time Weekend” – 3 days of constant family activities. Always fun, overwhelming (@ times there can be 30+ family) – lots of laughs and love! I just can’t help to look at this weekend in a whole new way this year!
Again – I’ll be in touch and thank you for the support you have all already shared with me.
Suzanne
Hello Suzanne….I would like to chime in and wish you a warm welcome and echo the responses given by the others. Stay positive and educate yourself about this disease as it will empower you in order to make informed decisions. Searching out another opinion (or two) from specialists treating a fair amount of CC patients will give you the extra assurance that your Dad is receiving the best of care available.
Please, keep us posted.
All my best wishes,
MarionHi Suzanne, All of us on here understand feeling lost and as Gavin said being hit in the head with a bat! My husband was diagnosed last fall at 59 and is now 60 and I am certainly not ready to lose him yet!
If your dad’s cancer is confined to the liver he may be a good candidate for a liver transplant. There are only a few places that do them and only for a select few. I believe that is what Cathy (above) had done. It is cutting edge technology but it can be a cure.
Also if he responds well to chemo it may put him in the position to have a resection.
Sorry, can’t help as well about doctors in Indiana for I am in British Columbia, Canada but Gavin has directed you to a good site and you may find other Indianians (if that is how you say it) speaking up.
Take care and keep in touch. Positive thoughts being sent to you, your dad, and family. NancyHi Suzanne, Welcome and sorry you had to find us. I am a CC survivor. I have been cancer free for 2 years. It will be 3 years July 31st I was diagnosed and my world as I knew it stopped.
You will find a well of compassion and information at this site. My best advice to you is make sure you are being treated by a knowalgeable doctor and hospital. We at this site are big fans of second and third opinions.
I am alive thanks to Barnes-Jewish Hospital in St. Louis MO and Dr. William Chapman. Being in Indy that is not to far an option, or another great place for CC is the Mayo Clinic.
There is HOPE, just keep asking questions!
Lots of prayers-CathyHi Suzanne,
Welcome to the site. So sorry that you had to find us all and I am sorry also to hear about your dad. But I’m glad that you have joined us all as you have come to the right place for support and help. I know how you feel right now and what you are going through. My dad was diagnosed with inoperable CC back in 2008 and he was also 64 at the time. When we were told the diagnosis I felt like I had just been hit in the head with a bat. My dad was in good health prior to this and this all came out of the blue. Like you, I felt lost as we had to take in so much information about something that we had never heard of before whilst at the same time having to come to terms with this diagnosis.
As I said, you have come to the right place as we all know how you feel and what you are going through right now. Please feel free to ask any questions that you have and we will all do what we can to help in answering them. I can’t help regharding doctors in Indiana as I am in the UK, but maybe this thread that was created by the members here will be of help to you –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
Also, this may be of use to you as well. It is a list of major treatment centres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
Do you know what type of chemo your dad is on, is it the Gemcitabine/Cisplatin combination? If so there are many posts on this site by the members who are or have been on this combination. The search forum finction at the top of the page will throw up these discussions.
Please try to stay as positive as you can. I know that this will have come as such a shock to you and is so hard to deal with. We are all here for you and we care.
My best wishes to you and your dad,
Gavin
Dear Suzanne, I want to welcome you to our wonderful family but so sorry you had to join us. We can all relate to how terrible you feel but an up attitude is still very important to cope with CC. We try to always remain realistically optimistic. It does sound like your Father’s doctor is on the right tract but if you ever have a feeling that you want to get a second opinions, we really believe strongly in doing so. We also always want to know if the ONC is familiar with treating CC. Please don’t pay any attention to statistics either as we have seen many on this Board out run their prognosis. As a Grandma I can say that the best RX is still your Father’s 2 beautiful Grandchildren! I know more members will be chiming in, so be strong, hang in and please keep us posted on the progress.
My name is Suzanne and my dad was diagnosed on June 20, 2011 with Cancer and on July 8, 2011 we were told that it was Cholangiocarcinoma. Meet with a surgeon and scheduled surgery for resectable. After a PET Scan on 2 days later we found out on July 15, 2011 that it is not – it has spread from the left lobe to the right.
Dad has started 2 rounds of Chemo, 3 weeks on and 1 week off, on July 15, 2011 – after the 2nd round we will have another CAT scan to see if there are any changes.
Is there anyone on here in the Indianapolis, Indiana area dealing with this same terible disease? Where do you go? Who is your doctor?
I’m trying to stay positive and have faith in our God, I just feel lost! My parents have been married for 43 years, my daddy is only 64 years old. He is a wonderful father and the best papa to my 2 young children (6 and 3), I can’t magine them not knowing the man that I grew up learning so much from, laughing so hard with and just loving so much.
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