positivity
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Hello B,
I understand your panic and frustration as I have been through this journey with my mom and at times overwhelming. Make sure you get breaks and not neglect your health so you can be strong enough to help. It can take you in so many directions, and it is working under pressure, and making quick decisions at times.
Can you contact Medicare and speak to a representative to assist you with the benefits? Surely, they must have an advisor.
I can’t advise on treatment or testing as that is a personal choice. What kind of CC does he have?
You are courageous to help you father and your compassion and will to do everything you can is great. I know it is stressful, but you have to take it step by step taking into consideration his physical and mental state at all times, keeping records of blood tests, scan results, and procedure reports. Most import a strong medical team in which you feel comfortable and have the confidence to communicate with easily.
Always understand the success rates and symptoms of particular treatments, and be prepared for symptom management for this illness as that is always a big concern.
Hello,
So interesting and true, as the tumors can be undetected in a person’s body for years before an actual diagnosis as symptoms don’t present until the condition worsens. Also, it is true that most times someone goes for something else which leads to the path of CC. My mom started with a case of chronic anemia, and doctors were clueless of its source, and about 10 months later there was a diagnosis of CC. After going through the overwhelming stress and understanding this illness, I found out it was actually in a scan result in 2014, but never pursued as the patient did not have any symptoms, so basically ignored for further evaluation. It was rare to find a case similar to hers, as most CC patients never start with a case of anemia. It shows how unique this illness is for everyone.
Hello Lili,
I understand what you are going through as a caretaker. I don’t want to sound redundant as I have shared about stents in my posts. That posed as such a challenge and overwhelm for me, but there was no way around it. It was necessary in my mom’s case, even if at times it was questionable that she needed the plastic stent exchanges so often. I even questioned, if she needed it from the beginning, meaning when diagnosed and it was placed right away. I was not knowledgeable about CC at that time. First procedure caused complications like pancreatitis, that is why I stress everyone to find a competent GI doctor who is an expert in ERCPs. About 7-8 plastic stent exchanges later and the tumor infiltrating ducts, stents were no longer possible and now its an external biliary drain. I wondered if stents cause more inflammation and scar tissue, therefore making the condition worse, then coming to the conclusion as it was developed for temporary use as medical doctors or scientists creating them for patients who don’t have a long lifespan. I also went back and forth with the plastic v metal. Eventually in my mom’s condition it was determined that the metal will get clogged also and will be hard to remove. In one respect it helping someone’s symptoms to live longer, but it does come with its possible complications and challenges.
Keep going and doing the best to help your dad.
Hello,
Thanks for joining our community, the best place to see a wide range of patients experiences.I know the frantic pace of diagnosis, and make sure there is a biopsy (done through ERCP) and confirmation report from pathologist that you understand well. There is so much new terminology that if you are informed it makes discussions with the medical team easier. Start getting organized with the medical paperwork including scans, blood results and anything from the hospital and doctor’s visits to take with you on all appointments. I recommend getting at least 3 different oncologists input, a surgeon and you will need a very competent GI doctor is stents are required. The most important as a caretaker is being informed, taking part in decision process, and being very clear on what is stated by doctor and medical staff as there is a lot to do.
Take care of yourself also, which makes you more effective to help.
All the best on this journey.
Hello Victoria,
Yes, stable in good. It is always about managing this condition continuously and always ready for symptom management. You mentioned the antibiotics due to the bile not flowing. Does he have stents? If so, how often does the doctor change it?
So wonderful for people to share the bright side of this condition and be determined to heal.
Thank you for sharing Genevieve!
I am so sorry to hear this news. When I joined this forum almost a couple of years ago, she was one of the first to offer support. I even had a telephone conversation with her regarding an issue. It takes people like her to help and make a difference. It is overwhelming to deal with an illness such as this, but a community with people like her are an immense help. May she be in peace.
Hello,
Thank you for joining our forum. You will find so much information and the most important thing is to become knowledgeable. Learn about all your options and read about other patient’s experiences. It takes courage to participate and you are in the right place for support. Please ask questions to medical providers and always be clear of what is expected. Symptom management is crucial from the beginning and get support right away. Do activities that are nurturing during this difficult time, whatever that may be for you. I hope for the best on your journey, and keep us updated.
When my mom was initially diagnosed with an ERCP and before the pathologist report, the GI doctor automatically inserted plastic stents, no questions asked. The doctor made it seem that the stents were necessary right away to open the obstruction and her bilirubin level was only about 4.5 . At the time I was unfamiliar with this rare condition and let the doctor make the decision, not that he asked for my advice, so it was part of the ERCP to get the biopsy sample and insert stents. I heard the same talk from multiple doctors: rare cancer, no successful treatment, chemotherapy won’t work, surgery not possible, and I will end it here as the comments came rolling in one after another for the first few months. It was a draining experience. Once this experience was complete, we sought treatment options. Check for other symptoms including the high bilirubin such as extreme itching and pain. In this case the stents are needed right away to relieve symptoms. This is something the doctor should discuss with you.
We take it day by day and never know what will happen as there have been surprises along the way. Last December the oncologist suggested hospice due to spreading in the ducts, and they were not optimistic at all. Family did not choose hospice as to some obvious reasons. She has the catheter and they were unable to cap it, and I wondered if this was ever possible in advanced CC. The catheter works just like the stents in replacements are essential every 3 months and some patients have to do this before the three month mark. She has gotten several replacements. Also, there are cases where the catheter does not even work. She is doing okay, taking into consideration how tough this has been and all the appointments and symptom management. I have gone through the statistics multiple times with doctors and you do get to a point in letting them know you get it. I remember asking about IPT therapy after diagnosis and it was an immediate , “No” , not even any thought put to it by a surgeon who is familiar with this condition, but you should ask for several opinions.
Please do a search on individuals who have had surgery and their results. That way you can make the best decision. How big is her tumor? Was this diagnosed through an ERCP by getting a biopsy sample? Just curious, as brushings of the tumor are typically not conclusive and a tissue sample is necessary.
April,
Thank you for sharing your story, and I have been there and understand what you experience. My mom was diagnosed with Klatskin tumor in late 2016 and the shock and stress was tremendous. Long story short, as you can read my posts, we continue this challenging journey. Treatment options are personal choices as is surgery. Doctors could not perform surgery on my mom as it was too risky. I do recommend looking at all your options and taking into consideration your mom’s medical history and get several opinions. Please let me know if I can be of any support. You will be a tremendous support for her, stay strong, ask questions, and be clear of everything that happens in any medical setting.
Hi Lili,
Sorry if I don’t answer the clinical trials question as that is personal choice and one cannot direct you to have your father participate or not. I do remember from the experience with my mom she was ineligible due to high bilirubin levels and she used stents for a year. They are strict with clinical trials and what was surprising it seemed the patient had to be doing well to be eligible when I thought it was for patients who are not doing well and progressing. I could not make sense out of some eligibility criteria and as shown in my posts she didn’t get treatment. Curious to know why the oncologist suggested to replace the plastic with metal stents.
All the best for your father.
Oh Fay, I am deeply sorry and I feel your pain. I check in once in a while here, and as a daughter also with a mother, it is a tough journey. Thank you for sharing. I know we go through so much dealing with the medical community and you have to credit yourself with strength to be beside your mother. I want all of us to find the peace which will allow us to move forward and to know that as family and caretakers we do everything that is in our hands and try to make the best decisions for our loved one.
I agree with the breaks, so important for the psyche and I had to give myself that space also, but the importance to share from time to time has also been very important. Please be kind to yourself and I always say there is no limit and time to grieving and everyone should nurture themselves and take it at their pace.
Peace and Warm Thoughts…
Thank you so much for sharing your story.
I know the journey is tough, as an advocate, caretaker, and family member it can be so difficult to see changes in your loved one and emotionally can sometimes take a toll.
It seems that losing weight is a typical symptom of this cancer as you are dealing with the GI area, where digestion occurs and if the bile ducts are blocked, digestion of fats is more challenging and the individual has less of an appetite.
From the standpoint of my mom’s experience, who did not have any treatment, only palliative care, she lost 40 pounds in 1.5 years and once the weight came off it has been an extreme challenge to put it back on. So it seems regardless of having chemo/radiation, this still happens because of the obstruction in this area. We got to a point where satisfaction of her even having a appetite was enough, even though it is a limited appetite. Also, with this condition it’s important to eat very small quantities at a time because they tend to quickly get stomach aches.
We understand your challenges, and keep us posted.
