Newly Diagnosed in North Carolina
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Dear Suzanne,
I will be praying that your husbands upcoming scan will have great results, and that the two of you can have clarity on the next plan of action. One step at a time is how we all have to take this journey. One thing I do know is that everyone responds differently and you have to find what works best for you. Hang in there and know we are here to help encourage and support you in anyway we can. Hugs….MelindaSuzanne –
Everyone has welcomed you and I would like to belatedly add mine. Your husband’s story sounds a lot like my husband’s. He just turned 51 in August and is now 17 months cancer-free.
He did do 6 months of traditional chemo (Gemzar and Oxaliplatin) every 2 weeks then a few weeks off and then 5 weeks of IMRT (radiation) with the 5FU continuous infusion. The radiation with chemo was really hard on him with a lot of weight loss and tons of symptoms. However he did really well with the Gem/Ox with only some cold sensitivity.
This disease makes every decision a struggle. We talked long and hard about each step but Mark wanted to do everything he possible could to make sure that it never came back. We have grandchildren now and he wants to be able to take them fishing and play that role now…..we are empty nesters finally. And we have decided that this is our new “normal” whatever normal is anyway and despite all of it try very hard not to let us change anything….some days are better than others but the new “normal” is livable so far.Good luck and keep us posted.
KrisVDear Suzanne,
Welcome to this group of loving supporters. Recurrance rates are high with CC but there are many treatment options.My scans for the last 18 months have been clear after 5 recurrences. Never give up hope and dreams.
Hugs
LisaThank you for your kind responses. This is my husband’s last week of chemo pump and radiation. A scan will be done in a month to see how things look. 18 additional weeks are recommended starting in January. He’s unsure if he wants to do that. He just wants life to return to normal…
Radiation has just made him tired and have a strange stomach feeling…but he’s done so well.
We both work for the state of North Carolina…he’s a social worker and I’m a teacher. This is how we have collected so much sick leave to be able to take off months. We are human service people who have always worked for little money…but we see the benefits MEAN A LOT at times like these.
Does anyone know how effective chemo is on CC? His tumor was removed…with clear margins…but the cancer was only 1 mm away. He’s had radiation with a chemo pump to make the radiation work better. So the 18 weeks have been recommended for prevention. But,, I’ve read chemo isn’t really that helpful with bile duct cancer. Thoughts?
Thanks,
SuzzazSuzanne –
There is so much help available on these Boards that is almost overwhelming. Take some time each day to explore. The Search function is good, but randomly following individual stories can tell you a lot, also.Help comes in three forms.
There is an enormous amount of medical information here. It can help you form questions for your medical team.The personal stories fill in the cracks not covered by medical information. They provide the inspiration to keep on, especially when the going gets tough.
Last, and most important, is faith. Faith in God. Faith in your medical team. Faith in each other. This is the part of your wedding vows where “in sickness and in health” steps up. It has been said by at least one person here that “This cancer sucks!” True, but it teaches you quickly what is important and what is not.
Duke
Hi Suzanne, Welcome and sorry you had to find us. I am excited to tell you I am 5 years cancer free!! There is HOPE!! I keep my story posted at http://www.catherinedunngan.com
I also did the chemo pump and side effects were minimal except major fatigue towards the end of my six week cycle (I did 7 days a week, 24 hours a day for 6 weeks, while doing radiation).
I love that you are counting your blessings, that is the key to your sanity during this time, appreciating that no matter how bad there is still light and HOPE!!
I am alive today because of God, 2 strangers, and Dr. William Chapman and the most amazing part that is exactly how Dr. Chapman would list it!!
Lots of prayers-CathyHi Suzanne,
Welcome to the site. Sorry that you had to find us and I am sorry to hear about your husband. But glad that you’ve joined us all as you are in the right place for support and help and you will get loads of each from everyone here. I’m real glad that your husband was able to have surgery and glad also that it went so well. Please try not to focus on the negatives or stats and stay positive if you can.
You are so doing the right thing in learning as much as you can about this cancer and as you say, knowledge is power and the better informed you are the better equipped you will both be when it comes to making decisions about everything to do with CC. And if we can help then we will. Please just ask and we will do what we can.
Keep coming back here and know that you are around people who so know what you are going through right now. We are here for you and we care.
My best wishes to you and your husband,
Gavin
Suzzaz…..Sure wish we could meet under different circumstances nevertheless I am happy that you have found us.
You and your husband have fantastic employers. How is that that you have accumulated one entire year of sick days?
Suzzaz, I realize that patients need to be informed about the recurrence of this cancer, but many others as well as I believe that we need to focus on the upper curve of the equation. Try to stay positive in believing the 20% of all patients do not have a recurrence and for the 10-15% to work in your favor as well.
So glad you found us. Please continue to share with us – we are in this together.
Hugs,
MarionDear SUZZAZ. welcome to our family as here you will find the best support for CC. First of all YIPPE and CONGRATULATIONS on the resection as many cannot have it. I found this Board when my husband had surgery, a Whipple, for CC 8 years ago. So we are young as a family but growing by leaps and bounds from where we started. We so understand how you feel and please know that we do not listen to stats or numbers as everyone is so different. We have had quite a few members who have experienced great success.
Here are some sites you may want to see:http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/At the top of the page is a Search button and you can enter any word and different posts will pop up on that subject. Be strong don’t jump ahead and please keep us updated on your husband’s progress. Keep thinking of that white picket fence!
Hello,
My name is Suzanne. My husband was newly diagnosed with cholangiocarcinoma in August. He is 51. We’ve been married almost 29 years. We live in Greenville, North Carolina.
Having never been sick in his life, he suddenly presented with strange itching….which turned out to be a side effect of jaundice. He was hospitalized, given various tests, and was given a bile duct stint (which didn’t work and only made him develop pancreatitis). Then a bile duct bypass drain was placed to get the bilirubin down to an acceptable level to have surgery. A resection was performed. We LOVE our surgeon…Dr. Emmanuel Zervos. The resection was successful. Negative margins. Cells were poorly differentiated. No nodes were tested.
A few weeks later his lung was punctured during the procedure to implant the chemo port. That meant another hospital stay with a chest tube.
Last week we started radiation and light chemo (pump) Monday through Friday for 28 days. Then doctors suggest real chemo for 18 weeks.
We’ve been told that this cancer has an 80% chance of coming back. Dr. Zervos says the firs t year is the most critical. He says if it comes back it’ll most likely be liver, lungs or lymph nodes. We are so afraid. We were just living the dream with our white picket fence…getting used to the empty nest…looking toward retirement and BAM….our world turned upside down. Doctors say this preventative radiation and chemo will only improve his chances 10-15%.
So, we are clinging to each other as we always have through life’s other trials and mostly we’re leaning on our faith in God. He has given us strength the past couple of months that neither of us ever dreamed we could have.
We have many blessings…like we both have a year or more of sick time at our jobs….we have good insurance…our friends and family have encircled us with love and support….and we know that God is good everyday—- even if we can’t understand/see His master plan.
I want to learn about this disease. Somehow I feel like I’ll feel more in control if I understand the science. Knowledge is power. I want to be able to ask the right questions and help him make wise, informed choices. I want to help him anyway I can.
I’m so surprised there is a foundation specifically for this. I thought this cancer was so rare that I’d never find any information on it. I’m so thankful that you are here. Thanks for all you’re doing to help people learn and understand it.
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