middlesister1
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Heap,
I’m very sorry to hear about your father’s diagnosis. This disease if often only found after it has spread. The most important thing is to get a consult with a doctor/center who are familiar with CC. We have seen some good news stories with progressed disease with some of the new drugs like keytruda or in clinical trials.
If you haven’t yet, info on the homepage for newly diagnosed may be helpful.
http://cholangiocarcinoma.org/newly-dx/
I’m hoping others from the UK can chime in.
Best wishes,
CatherineDear Joe-
Thank you for sharing. The love she had for her family was so strongly shown in the pictures.
Love and hugs,
CatherineDear Joe,
My heartfelt condolences are with you. With My Dad, we had one night in hospice which was a blessing for us too. It allowed us to step back from caretakers and just be there to be family members. It was very important for Mom.
You are in my thoughts and prayers and please know that we are here for you.
Thank you for taking the time to let us know.
love,
CatherineDear Ben,
I am very sorry for your loss and that your wife had to follow the road. As importantly as the angels, she was fortunate to have you by her side.
Take care of yourself,
CatherineGail,
I hope tomorrow is a better day, but if not, thats ok and we’re here for you. Please vent or contact us directly (click on nanes to email) privately) over the years, the folks here supported me through hard times
Love and hugs
CatherineHi,
I am still searching for the article Gavin posted which made me discuss chemoembo with Mom’s doc ( it had great results and gave me the courage to say lets kill the tumor while we can). Although for Mom we went with Y-90, the attack seems to be the same.
Going through my files, I also found the one below-
https://www.ncbi.nlm.nih.gov/pubmed/21833806PURPOSE:
This study was designed to investigate the clinical outcome of patients with irresectable, intrahepatic cholangiocarcinoma (IHC) treated with computed tomography (CT)-guided HDR-brachytherapy (CT-HDRBT) for local tumor ablation.Although not all were “cured” “, 4 of 15 did not get further chemotherapy and are regarded as disease-free”—- those results gave me the hope I needed although they were contrary to what we were told was possible ( this study was on irresectable patients).
Memory is I brought this study and the chemoembolization one to our ONC to say we wanted to kill the one tumor while we could. We are thankful that it worked, and I am optimistic that it can for you too.
With Mom, they still don’t say cured, but after being told one-year prognosis, 3 years disease/treatment free is what I hope someday is the norm for all here.
love and hugs,
CatherineYou got this. I’m not sure what you saw to make you apprehensive, but when I was looking for treatments for Mom, chemoembolization seemed to offer hope for long-term survival. (read the warnings on tylenol and it will drive you to valium too- (just don’t read the warnings on the Valium because we want to keep that in the mix)
You did your research, now it’s time to trust the docs. I am excited about hearing your success in the future. We never imagined my Mom’s success, but it can happen.
Best wishes,
CatherineDear Joe,
We started much too late, but Dad liked that we bought a small digital tape recorder to allow him to record thoughts or stories, or just leaving it recording while we sat around the kitchen table chatting.
I am do sorry you are at this point. Please tell Debbie that my thoughts and prayers are with her.
I wish I could do more.
Love and hugs,
CatherineDear Hopeful,
I’m sorry to hear of your husband’s diagnosis, but very happy you found us. I hope your meeting tomorrow gives you answers. We often found it helpful to write down the list of questions, and the more ears the better. Some have mentioned tape recording the visits and I think that would be good if possible.
Since CC is very rare, we are big advocates of getting second or even third opinions. It is important to be treated at a Center which has specialty in cholangiocarcinoma. Ideally, you have an interdisciplinary team of doctors (ONC, radiologist, surgeon, interventional radiologist).
I am not a medical professional, and those who are may cringe at how I try and describe the tumor and Y-90 (Mom had chemo and two Y-90 treatments). I look at her primary tumor as a dandelion whose spores (cancer cells) can land other places in the body and grow. Chemotherapy treats the whole body (spreading weed killer over the lawn) and ideally attacks all mets and also cancerous cells which haven’t grown to a point yet where they can be picked up by tests. This is different that the Y-90 where the interventional radiologist is putting the radioactive seeds directly into the blood supply of the tumor. I envision this as going out and pulling the one dandelion out by the roots. Even if the Y-90 kills the primary tumor, they still have to address what has spread elsewhere. The Y-90 is only effective at the targeted locations they implant the radiation.
My thoughts and best wishes are with you and your husband,
CatherineDear Julie,
Hope all goes well- looking forward to hearing about squeaky clean scans. Do they typcially call you with results or do you have to wait for follow up visit?
Best wishes,
CatherineDear Lainy,
You will be terribly missed but I am also excited for you . Your caring and beautiful heart came through every post. I know how welcome you made me feel when I first found the board, and your poems have helped us in times of sorrow.
We will be looking forward to you checking in and letting us know how you are.
Best wishes for health and happiness,
Catherine
Dear Hopeseeker,
In 2013, when my Mom was diagnosed, I was looking for hope too. After an unsuccessful surgery ( they just closed her back up ) we were told 1 year and chemo might give her 3 additional months. Mom is still going strong- although she is not the norm, there are more and more success stories. We were told no cure without surgery, but we are fine with long-term remission. We found a doctor who did aggressive radiation and she is a survivor.
There is hope.
Where is she being treated? I agree with Lainy on getting multiple opinions and asking about genetic testing and clinical trials. Although we ultimately have to trust in the doctors, we also can push to find doctors who know how to treat this rare disease.
Best wishes,
CatherineDear Tiah,
My heart goes out to you. Although not enough, I’m glad your Dad was by her side. We lost my father (lung cancer) in Feb, and I know you will be there to support your father, but also take care of yourself. If you ever need someone to talk to, please email me.
Love and hugs,
CatherineI could be incorrect, but I think you are referring to chemoembolization (TACE)- If so, when I was reading journal articles trying to find what was working, chemoembolization came up many times.
Transarterial Chemo Embolization (TACE)
Transarterial chemo embolization therapy involves administration of chemotherapy directly to the liver tumor via a catheter. With this technique, the chemotherapy targets the tumor while sparing the patient many side effects of traditional chemotherapy that is given to the whole body.
Following chemotherapy, your physician will embolize (cut off) the blood supply to the tumors. In this manner, the tumor is treated using two different techniques. If necessary, TACE can be performed multiple times to achieve the desired response in the tumor.
Best wishes,
Catherine
