Mom’s diagnosis
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Thank you everyone for your support and words of encouragement…as well as the information.
Nancy, do you mind sharing with me the naturopathic supplements that your husband is taking? I have family members who are very interested in this area and others who are leary of it and would like to be able to share what others are doing that they find helpful (or not).Thanks again to everyone.
Feeling better after reaching out.Amanda
Dear Amanada, welcome to our wonderful family but sorry you had to join us.
We are always hopeful or as I like to say, realistically optimistic! We do have many stories of hope and my husband is one of them. He had a Whipple surgery 6 years ago and the doctors didn’t expect him to survive a year….he survived 5 /12 years. No one is born with an expiration date and stastistics are just that…numbers. A strong and upbeat attitude is really the best RX. You have come to the best place for support and please do keep us popsted on you Mother. Oh, and as said above, we are strong believers in 2nd and 3rd opinions.
We are a site here of ‘Miracles”.Hi Amanda,
Welcome to the site. I’m sorry that you had to find us all and also to hear about your mum. But I am glad that you have joined us all as you will get so much support and help from all of us. I am sorry also to hear that your mums surgery did not go as planned. Unfortunately as Marion has said to you this is not uncommon when it comes to CC, and we have seen here many times this happening. Buit I do wish to echo what Marion and Nancy have said to you, please do not give up hope. I know that you are devastated and can understand that, but I so agree with what has been said about a second or even a third opinion for your mum with regards to other treatment.
Here are some links that may be of use to you here. Here is a list of major treatment centres in the USA –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
And here is a list of treatment centres and doctors that was created by the members here –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
Hopefully some of the will be of use to you and I am sure that others will be along soon to offer their thoughts and experiences as well.
You are doing the right thing for your mum in coming here and looking for further information, and the more information you have the better informed you are when it comes to making decisions. And also, if you have any questions at all then please just ask away and we will do what we can to help in aswering them. I know that this is such a tough time for you right now. But we know how you feel and what you are going through, and we care. Please let us know how things go for your mum.
My best wishes to you and your mum,
Gavin
Hi Amanda, You will find many on here that far outlive their prognosis. My husband’s cc was extensive when they found it nearly a year ago. It was all through his liver and skeletal system. He was treated with and responded to chemo and he also sees a naturopath and takes naturopathic supplements to boost his immune system. This has enabled him to be stable for 6 months now. As Marion said, never give up hope because hope is what keeps us going and enjoying life. It is so hard at first to not have the cancer all encompassing so my advice to you and your mom is to enjoy life as much as you can outside of the realm of cancer. Take care. Nancy
Hello Amanda and welcome to the club no one wants to belong to but is glad to have found. As it so happened with your Mom the true extent of the disease only can be assessed in the operating room. I feel for you and your Mom. It always is devastating news to receive and we have witnessed this on this site way too often.
I am a strong believer in second or more opinions obtained from those centers highly familiar with this cancer. You would want to gather all medical records including, everything and anything pertaining to this disease such as blood tests, ct scans, physician’s reports, etc.
Please, do not give up on hope. People have been able to survive with this cancer much longer than they have in the past as often times aggressive treatments have shown to be quite successful. And, we do not know what good news is around the corner for us.
Others will soon chime in and share their thoughts with you also. We are in this together.
All my best wishes,
MarionHello All,
My mother was diagnosed with stage IV CC back in May. She’s 63 and is otherwise in very good health. She underwent several rounds of chemotherapy in hopes that they could reduce/stabilize the tumor and perform a resection. The Dr. told us it was a very aggressive treatment given the severity of the cancer but that because she responded so well to her chemotherapy (they were able to neutralize the tumor’s growth) he would give it a shot. We put all of our hope on that surgery and then last week, during the surgery, it was discovered that it was too advanced. The surgeon gave her about a year and used words like, “It will take a miracle.” Needless to say, we are all devastated. I’m looking for both words of encouragement, and things to say to her to keep her fighting and seek a second opinion. I’m thinking Mayo Clinic or U of M since we are in Michigan. Mom is very much a realist, as am I. We don’t want to build up hope (yet again) where there may be very little and I don’t want to be an empty cheerleader for her. I want to be able to give her real stories of people who, with similar situations, were able to seek additional information and treatment and use it to prolong their lives. Thank you for any help that you can provide.Amanda
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