October 17, 2020 at 1:27 pm #100520
It is good to hear from you, but I am so sorry that your uncle is not feeling well.
The symptoms you are describing could be from the cancer and/or side effects of treatment. This is a question for medical providers – will his next appointment be soon? With his next scans and other diagnostic tests the doctor can tell your uncle if the chemotherapy is working, and he or she can see if there is a particular cause of the symptoms your uncle is experiencing.
When I was having chemo, the nurses who worked in the infusion center were a great source of tips on how to relieve side effects. I was given a phone number to call if I was having any difficulties. When cancer patients don’t feel well, they should push medical providers to try different nausea or pain meds or other relief supports. I remember the first nausea med I was given made me feel worse so I stopped taking it after the first few pills. When I finally got around to mentioning this weeks later, the doctor tried something different which was better. In retrospect, I should have asked sooner.
Here is some information from the Roswell Park Comprehensive Cancer Center website for cancer patients with tips that might help relieve abdominal discomfort. https://www.roswellpark.org/cancertalk/201704/bloating-cancer-treatment
Your uncle must feel very comforted to have you helping and supporting him. Please keep us posted and send any questions our way.
Regards, MaryOctober 16, 2020 at 11:38 am #100518
Thanks for your responses. This forum has been very helpful in understanding this disease.
My uncle has completed 2 cycles of chemo. Gem/Cis.
Is anyone aware of how quickly his symptoms of abdo discomfort and bloating may respond to chemo?
Can there be improvement of symptoms within 1 or 2 cycles? Or does it take longer for the chemo to have an effect?
He is struggling with the ongoing symptoms of abdominal discomfort/cramping ‘tightening pain’ & bloating. Its hard to understand whether the chemo is working or if there will be no response. Like many others we wait in anticipation.September 6, 2020 at 1:44 pm #100416vtkbParticipant
I’d say try to get a second opinion (with scans) with other surgeons in the UK that see this disease a lot. Is your uncle being treated at a big cancer center?August 31, 2020 at 12:12 pm #100401
Invasion of blood vessels (“vascular invasion”) can occur with cholangiocarcinoma. It complicates or prevents surgery if the arteries involved or other nearby geography cannot be safely removed by surgery. There have been a few patient cases reported on this board where chemotherapy reduced tumors enough so that a nonresectable tumor became resectable. Your uncle’s doctors should be able to advise if this is a possibility in his case.
Chemotherapy can be beneficial in other ways. For many patients, it can stabilize the cancer, slow its progression and shrink tumors so they they are less invasive or disruptive to the functioning of the digestive tract. Chemotherapy side effects can generally be managed to help maintain quality of life.
There are many patient stories posted on the board. If you search the board, you will be able to find patient experiences with different types of treatment.
Regards, MaryAugust 31, 2020 at 11:20 am #100400
Thank you Mary for your kind words.
Yes, it has been a very difficult time for all of us but particularly my uncle as the surgeons performed a full laparotomy.
Have other patients had similar presentations where the hepatic vessels have been involved? There is no involvement of any other intrabdominal organs we are told apart from the bile duct, pancreatic head and the hepatic vessels. There are no distant mets. Is anyone aware of any success stories where this type of cancer has been controlled with chemo+/_ radiation which has then led to the surgeons re attempting the whipples?
Thanks in advanceAugust 31, 2020 at 10:54 am #100399
Welcome to our community. Your uncle’s recent diagnosis was not happy news and I am sorry he is in so much pain.
His experience so far is similar to some other patients who have posted on this board. When patients are referred to surgery, often the surgeon will perform a laparoscopic procedure first to take a direct look at the tumor. The abdomen is a crowded part of the body with many organs, blood vessels, bile ducts and other features, so sometimes tumors and the extent of spread look different in person than on the images. It does happen sometimes with our patients that the cancer proves inoperable despite a more optimistic picture in the scans. When this happens it is hugely disappointing, and also the patient has a recovery to get through from the initial exploratory surgery.
Gemcitabine together with cisplatin is the workhorse chemo treatment for this cancer. Radiation is used to treat cholangiocarcinoma, but less commonly. For certain presentations of the cancer, it is reported to offer a potential benefit. Treatment options should be discussed with the doctors, to learn the expected benefits, potential side effects, and other information needed to make an informed choice.
Cholangiocarcinoma patients can experience pain, sometimes substantial, resulting from the encroachment of the tumor(s), or as a side effect of treatment. Your uncle is contending both with the cancer and with recovery from the surgery and bypass procedure. Pain can be managed, but it is very important to be proactive and to insist with doctors that they adjust pain medication to bring maximum relief to the patient. Often pain management with this cancer is trial and error – if the current regimen is not working, then the doctor should offer an alternative medication(s) or dosage(s). Also, it can take some time for the digestive tract to return to normal functioning after surgery. His doctor may be able to offer relief from issues such as bloating or constipation.
I am sorry your beloved family member is going through such a difficult time. Hopefully his doctors will offer a treatment plan to bring the cancer under control and will given him better options for pain management. Covid complicates all of our lives in many ways, but for cancer patients, covid has been a particular challenge. I hope your uncle feels better soon. Please stay in touch, take a look at the resources for patients and caregivers on the Cholangiocarcinoma Foundation website, and send any questions our way.
Take care, regards, MaryAugust 31, 2020 at 8:17 am #100398
hello my uncle who is normally fit and well was diagnosed with CC this year. He became unwell and had a bilary stent fitted but the diagnosis of CC was difficult to make with the covid lockdown in the UK and also PET scan was negative. After a second endoscopy biopsy confirmed distal CC (adenocarcinoma).
Whipple’s procedure was attempted but the disease which appeared stable on the preop ct had spread to involve the blood vessels around the liver/pancreas so the surgeons could not remove the tumor.
The surgeons created a bypass for his digestion between the stomach and the small bowel so that the tumor would not cause obstruction.
At home he cannot sleep, has severe cramps in his abdomen and bloating. He is not eating much.
He has been told that this is now an inoperable tumor due to the involvement of the vessels. He has been offered chemo gem/cis regime.
My concern is he is very symptomatic with little sleep and abdominal discomfort. Is this common with distal CC? He has been offered chemo/rad in a trial and we dont know if there is evidence for radiotherapy in CC management?
Has anyone else heard of the tumor being initially resectable to unresectable based on operative findings? The scans arent picking up the extent of the disease. Even MRI.
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