Mom Diagnosed in April
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Hi Kristin,
I am sorry to hear that your mom is battling our rare cancer. As you heard from vtkb, with our cancer it is essential to receive skilled medical advice from doctors who have seen a lot of cholangiocarcinoma patients. The Cholangiocarcinoma Foundation website has a provider map tool that can help you find doctors and treatment centers in your area.
Generally surgery is not offered in cases where the cancer has spread outside the liver and bile ducts, although there are occasional exceptions based on the surgeon’s judgment. Once the cancer has spread, the concern seems to be that the surgery could do more harm than good, so doctors turn to chemo and other treatments in hope of shrinking the tumors and keeping the cancer stable.
There are a lot of cancer drugs being tested through clinical trials. It is not clear to me why your mother would not potentially be a candidate. If you go to clinicaltrials.gov you can search for trials in your area or as far away as your mother might be willing to travel. You can try several searches: “cholangiocarcinoma,” “solid tumor” and “biliary cancer” would bring up a set of trials. Each trial listing toward the bottom gives information for a point of contact whom you can call or write to and see if your mother might be a good candidate.
Often the trials are offered when the initial treatments lose effectiveness — each trial listed at clinicaltrials.gov will tell you the requirements for eligibility. But with this cancer, doctors and patients look to have their Plan B and even Plan C in mind (just as your mom’s doctor is mentioning possible radiation.)
I hope your mom’s treatment keeps her cancer well controlled. Please take a look at the many patient and caregiver resources on the Foundation website and please send any questions our way.
Regards, Mary
Im sorry to hear of your moms diagnosis. You didn’t mention where you are being treated, so I think the first step is to seek a second opinion at a major cancer center (MD Anderson, Sloan Kettering, etc) if you are not at one already. Browse the posts on these sites as much as you can tolerate to learn more about the disease and how people have handled it. Was your mom’s tumor biopsy sent for genetic testing? If not, push your onc to do it or have them send it to Foundation One- those results may open up a whole new set of treatment options for your mother. Good luck!
Hi,
My name is Kristin. My 69 year old mom was diagnosed with cholangiocarcinoma in April 2019. It was a shock to us all. No one in our family had ever even heard of bile duct cancer. Mom had an elevated alkaline phosphatase in August 2018. The doctor told her to have the blood test completed again in 6 months. It was even higher in February so a liver MRI was ordered which led to a biopsy, which led to her diagnosis. It is now considered advanced cancer and I have to wonder if her doctor had ordered the MRI in August, would the cancer have been so advanced? She has a tumor in her bile duct/liver, a lymph node that is involved near the pancreas (I believe) and then several more small lymph nodes that “lit up” in the abdomen area on her PET scan that are suspected (but not confirmed) to be metastasis. Mom started chemo in April (gemzar/cisplatin). We were told after 3 or 4 cycles she could meet again with the surgeon to determine if surgery would be an option. He said if things were stable and her blood tests showed improvement, she would be a candidate for surgery. We went back to the surgeon in July. The tumor in her liver/bile duct had shrunk a little, but the one in her lymph node was slightly bigger. Her blood tests have all shown a lot of improvement since beginning chemo. Her liver functioning tests are almost normal. Her tumor marker blood test has shown improvement, too. The normal range is 0-39. My mom has had astronomical numbers – much higher than most with cancer. In April, her tumor marker number was 61,000 – the doctor said this is very unusual. It has dropped to 5,000, which is still really high, but at least it is dropping. Well, our appointment with the surgeon was devastating. He said that the surgery would be extremely risky – 10% chance of death from surgery, 75% chance of complications, 90% chance the surgery would not cure her cancer and it would return. After getting a second opinion from another surgeon, it seems that surgery is not going to be a viable option for my mom due to the location of her tumor and the involvement of the lymph nodes. The doctor said she can stay on the gemzar/cisplatin for a few more cycles. Then they can try some rounds of radiation. After that, an oral chemo drug that I can’t remember the name of. We asked about clinical trials, but were told she didn’t really qualify for any. I have a few questions. Are there any other treatment options that have worked for others with this cancer? Is there anywhere else we can go to inquire about clinical trials? I know every person’s cancer and journey is different, but how long do people usually live with this cancer when surgery is not an option? Thank you in advance for any information, advice and support you can offer. This is a brand new world for my family. We are still in a state of shock that this is happening and are terrified with the prognosis of the horrible disease.
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