I am new to the site also
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Dear Dave,
I am so sorry to hear about your wife’s diagnosis. Glad you found this site as it is full of so much information that will help you in so many ways. Read as much as you can and ask as many questions as you can here, and with the doctors you see.I have been fighting this cancer for almost five years now. Hang in there and give your wife a hug for me! There is hope! Please keep us informed of her progress. Prayers to you!
Melindawe have not been to Moffit but we have been to Florida Hospital. The entire thing started with her having what I thought was a heart attack but it turned out to be the need for a stent due to the blockage. After MRIs & CT scans, we were steered to a surgeon, Dr. Alexander Rosmurgy and Dr Sharona Ross, who have the experience we are told to perform this as well as teach it to others. Florida Hospital is a teaching hospital.
Tomorrow Nanc will be having a chemo port installed. We have yet to meet an oncologist or hepatologist(?) This is why I am confused. I don’t know the protocol or steps that are ordinarily followed.
The doctors so far are in our insurance network, I don’t think we could afford treatment otherwise.
Again, thanks so very much.
Dave…I too would like to welcome you to our site. None of us want to be part of this exclusive club however; given the nature of this disease and the rarity of occurrence, our site provides the much needed support and clinical information for those touched by this cancer. So glad that you have found us.
We much understand your feelings of bewilderment and as you say: of being a mess. But, as time goes one, you will get a better grip on the situation and your mind will relax a bit. Know that chemo-embolization has been successful for many; please don’t hesitate from reaching out to the fantastic members on this site for any further questions you may have. All are eager to help and share information with you. Hang in there, we are in this together.
Hugs,
MarionHi Dave,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your wife as well. But glad that you’ve joined in with us here as you are in the best place for support and help, and I know that you will get a load of each from everyone here. Thanks for sharing what is happening right now with everything. Where in Florida was your wife diagnosed and where is she being treated right now? Reason I ask is that we have many members here who will be able to give you specific advice re hospitals etc especially so should you wish to seek further opinions about anything.
Please do not worry about being up on the terms of everything etc and we all know that this is such a steep learning curve that we all go through. And as for you being a mess right now, we’ve all been there too so please don’t worry about that. I can still remember how I felt after hearing my dad’s diagnosis, like I’d been hit in the head with a bat. We have a good book that can be downloaded as an e-book should you want to and I am sure that this will help you with everything. It can be found here –
http://cholangiocarcinoma.org/news/foundation-resources/
The e-book is free to download and I highly recommend it for reading.
I know that your head will be spinning right now with everything that is going on, but please know that you are not alone in this. We are here for you and we care. Please keep coming back and feel free to ask questions and we’ll do our best to help. I look forward to hearing from you more.
My best wishes to you and your wife,
Gavin
Dear Dave, welcome to the best place to be for CC Support! If you arrow up to the top of this page you will see an orange ‘ball’ that says Menu. Click on that ball and it will take you to a list of items where we have a glossary of terms. Also you can go above here and click on Search and just type in any word and a host of posts will come up in reference to that word. Where is your wife being treated? There is a very good Cancer Center in your area called Moffitt Cancer Clinic. We have had quite a few patients go there. I know you are upset but the best thing you can do is some reading when you can as knowledge is our best tool for fighting this Cancer. We also believe heavily in 2nd and even 3rd opinions as other opinions have changed many lives here for the better. Lastly but far from last, you want to make sure that your wife’s ONC has experience with CC and also the hospital she is being treated at should have experience with CC. I think that is enough to throw at you for the first time as I know it is hard to concentrate at first. Honestly once a treatment plan is in place your fright will turn to fight. Please keep us updated as we truly care and you are not alone as we are one big family.
my wife has been diagnosed with CC of the bilary tree. They have done an embolisation of the right side of her liver and we are to see a gastro doctor today.
I am not up on the terms used or the types of treatments, We are located on the west coast of Florida and from what we’ve been told are in excellent hands concerning surgery.
She was diagnosed on September 10, 2014 and has a 1.3 cm x 1.5 cm tumor on the duct. I will
try to be more specific but at present I’m a mess.Thanks for this site, It’s very much appreciated and needed.
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