cazgirl71
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Duke,
My husband graduated from SUNY Oswego in 1972, where winter was always a challenge, and growing up in Liverpool, Heids was his favorite.
I am currently working with the Mayo Clinic research group and our sons are participating in the genetic study group. Results will be shared with us, as research progresses.
Our family mantra is “advocate to eradicate”.
Cazgirl71Olga, and All!
I did not mean to cause confusion, or be insensitive either, as my family and I were where you and your family are, in March…we only had 16 days from beginning to end. Once you answer all those health questions, and submit the application for clinical research; you and your sister-in-law, if they choose to participate, will be contacted and at that time a release of information will be sent in order to obtain records.
It is so crucial that bile samples (to help establish diagnostic markers) and tissue be available for this research, and because this cancer is so deadly and quick, living participants are few, but can play a key role. Sadly, my husband is participating posthumously.
My prayers are especially with you & your family, at this time.
Cazgirl71
Dear Olga,
As with everyone else, I too can’t believe you and your family are dealing with this terrible cancer times two family members. I lost my husband after only 16 days from diagnosis to his passing, earlier this year. He, too, was Stage IV upon diagnosis. He had no previous symptoms.
After his death, I decided that I had to know more about this silent killer and found the Cholangialcarcinoma Foundation and have gotten great support and some answers to some of my questions. I registered my husband for their clinical research group which is coordinated through the Mayo Clinic, and his case has been accepted for their research. This research would be best served with patients that are currently living, as tissue and bile samples would be freshly available.
Please pass this on to your brother, who, as you also, could get all of the records and diagnostic tests that the Foundation’s research group needs so badly, to try to eradicate this horrible cancer.
My Prayers Are With All of You!
Cazgirl71Dear Kevin,
My deepest sympathy to you and your family. My husband presented to the hospital ER with stomach & back pains and jaundice, on March 10th of this year and passed away 16 days later. My family & I can truly appreciate your feeling of shock. From the day of his diagnosis, we were told he was Stage IV, and there was no time to fight. I think I know now how it feels to have a tornado touch down, take a loved one and toss your life into a million pieces.
I agree with you, thank God for the CC Foundation, and all they are doing in research; and for the amazing support and knowledge from all on this site. Please keep in touch with us! This site is truly a refuge, in a huge storm.
God’s Peace to you and your family!
Cazgirl71
Dear Marion & Olympics,
I think it is worth investigating, as to whether there is any correlation between shingles & CC, as it pertains to body site of the shingles. In my husband’s case, his was severe and presented in a 6″ wide band from the middle of his stomach to the middle of his back, on the right side. He suffered from extreme itching even after the blistering had healed through is diagnosis with CC.
I also wanted to make a comment on the lack of blood tests available to detect bile duct cancer. My husband’s Gastroenterologist stated that the markers have not yet been established. He thought it could be another 10 years. Can anyone confirm from the CC Foundation that work has begun on these markers; and, if so, status before they might be available. My husband was so faithful with yearly physicals, which included blood work, I would so love to see a check for CC and other “hidden” cancers be detectible with routine lab work.
My best to everyone!
Cazgirl71Thanks Gavin, for your post regarding Hospice. These “angels” are amazing and a gift to both the patient, caregiver and family members. They so lovingly guide all involved through this extremely difficult time with compassion and grace.
After my husband passed, we included Hospice in our “in lieu of flowers” contribution as a huge thank you from our family for all they did for us. Following his passing, we have received supportive literature specific for each family member – spouse, children and grandchildren, and continue to receive a new packet & outreach, quarterly.
I just started attending the “grief support group for spouses” at our local Hospice facility. The hardest, but best thing I have done for myself, since my husband passed in March. No one truly knows what we are going through, except other spouses. They also offer support for your family members of all ages, including camps for our youngest grievers.
Hospice is for everyone!
Cazgirl71
Dear Reacher,
My husband was sent to the ER by his PCP, with jaundice, stomach & back pain and a cough. The ER staff drew labs, did a CT & MRI leading to an initial diagnosis of Non-Hodgkins Lymphoma, with orders written for a biopsy of his liver & several lymphnodes, to be done the following day.
After the biopsies, he was officially diagnosed with Cholangiocarcinoma with full liver & lymphnode involvement.I am praying, Reacher, that your husband’s diagnosis was early enough that he may be receiving treatment and eligible for a liver resection. My husband was already Stage 4, upon diagnosis.
Praying for you and your family!
Cazgirl
Thanks to all who have welcomed me into the fold and for your support and advise regarding my concerns that this may be inherited. I did enter my husband’s case on the CCF International Patient Registry, and have the records and diagnostic CD to share, if his particular case is accepted.
I’m sure I join all of you with the mantra to “advocate to eradicate”.
My heartfelt thanks!
Cazgirl
