pak001
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Erine,
I’m so sorry your mom is feeling so badly. I agree with Lainy. Seems like this doctor has already given up. My mom had two internal stents and one external stent via ERCP. Lainy is right, these stents are placed in to relieve the blockage. Once inserted in the blocked area, flow should resume. The problems my mom had with the stents were the numerous infections. These stents, especially the small, plastic stents block very easily and result in infections. My mom also had the jaundice, the clay colored stools, all due to the blocked stents/infections.
I totally agree with Lainy that if you can, get a second opinion.It’s been 13 months exactly since my mom passed away. I still have those days… I miss her everyday.
One of the things I miss the most is saying the word MOM. I never knew how precious the word MOM is until my mom was gone and I had no one on earth to call Mom. I know she is no longer suffering, no more pain, but it doesn’t take the pain of missing her.I’ve been following his mother’s posts on FB. I cannot imagine. It is horrible losing my mom last year, but losing a son, so young. I am at a loss for words.
Have you tried applying for medicaid? I know it’s not a fast process, but just as Kris v recommended, speak to the social worker and they may be able to give you information. Let them know of your situation and hopefully, they can assist you in the right direction.
Kris V.
I couldn’t have said it better myself. I also am a home care nurse and agree that home care services are not utilized enough. I think if doctors were better educated on the variety of services available for patients at home after discharge from hospitals, it would help patients and families…Also, if anyone is a veteran, I do believe the that government will pay for private duty assistance in the home that medicare and private insurances do not cover.
Also, speak to a social worker at the hospital or if you already have home care services at home, most home care agencies have social workers available, they may be able to assist you finding volunteer organizations may offer respite care.
My mom was diagnosed with renal call carcinoma approx 12 years ago. Partial nephrectomy took care of that, but unfortunately, she was diagnosed with this 12 years later.
My mom received IMRT and chemotherapy at the same time. Chemo: gemzar only. IMRT 28 sessions. Gemzar for 7 months. My mom decided to stop gemzar after 7 months because she was feeling so ill. Initially, she received clear scans(CT and PET scan) after treatments, but then became ill only one month later because of occluded bile ducts. She then required stents. Her tumor was also in the caudate lobe. No surgery due to involvement of portal vein.
Everyone responds differently. Unfortunately, mom initially received great news after treatment was done, but then only one month later, complications started.Hello fntn,
My mother’s needle biopsy came back negative for cancer, but PET scan showed concern. They obtained sample via ERCP which came back at positive for the cancer.
I pray that you will receive good results!
Hi Michelle,
I am sorry, I took so long to respond to you. First of all, I hope your mom is doing well and she enjoyed her trip!
My mom received radiation and chemotherapy at the same time. She received total of 28 sessions of radiation and chemotherapy once a week for 3 weeks, with one week off for approx 7 months. She was supposed to go 8 months, but she decided she had enough. She tolerated both treatments fairly well for about 2 or 3 months, but then complications one right after another. My poor mom was hospitalized approx 10 times in 18 months, most of the time because of the side effects of the chemotherapy. She went thru hell. She then finally decided she had enough and requested to stop chemotherapy. She got about one month off, then repeat PET scan and CT scan. The oncologist was actually surprised that the liver had improved significantly and that the tumor appeared to have shrunk and was not seen on the scans. He wanted to see her again in 3 months for repeat scans. Then about one month later, I noticed she was jaundiced, called oncologist, they scheduled another CT scan and they found that her bile ducts were occluded. She then was scheduled for ERCP, resulting in 2 plastic stents. They could not insert metal stents because the ducts were too narrow. We could not believe in just one month, how she can go from a clear scan to occluded bile ducts requiring stents. From then on, she became sicker and more hospitalizations due to infections from the stents.
Michelle, the stents, especially plastic (because they are smaller in diameter) are prone to infections. My mom became septic, ICU for almost a week, then it was down hill from then on. I think she was just so sick of being sick and spending majority of the time in the hospital.
As I stated, before she was diagnosed, she was her normal self, active, no pain. She was completely symptom free. But, in her case, it was after she received the treatments that she became so ill.
So, in hind sight, I think, if we could go back in time, I think my mom would have chosen not to receive treatment, given the difficulty she experienced from the radiation and chemotherapy. But, when you are told that you have cancer, you initially want every treatment that is available.Everyone is different Michelle. My mom just did not do well with the treatments given to her. Especially after the stents were placed. But every person has different experiences. What we learned from our experience is that quality of life is so much more important than quantity. We, especially myself was so not ready to give up and did not want to lose my mom and encouraged her to go through the treatments. But, I saw my mom suffer so much that I wish I can go back in time and knowing what I know now, realize early on that quality of life is more important. Sometimes I feel so guilty, but I know that will not bring my mom back. I miss her everyday, but I know that she is with God and is not suffering anymore.
I hope your mother stays well. Don’t be afraid to ask questions. You are your mom’s best advocate. But, if you feel like crying, cry. It is a tough journey.
Stay well.Anna
Hi Michelle,
So very sorry. I must say that your post almost mirrors my mom’s journey. At first, I too spent every chance I got on the internet looking for more information about this cancer. But, this site is such a good resource. Wonderful people here with great advice and support.
Unfortunately, my mother passed away over 7 months ago. It was a very difficult journey.
My mother’s tumor was centrally located, did not qualify for surgery either. Tumor was about the same size as your mother’s. She went thru chemo and radiation, which was hell. When she was diagnosed, she was completely asymptomatic. They actually found the cancer by accident. But probably about one month into the radiation and chemo, she became ill, in pain. Everyone is different. Some tolerate treatment well. But in my mother’s case, she did not, but she completed chemo for about 8 months. Then a month after her treatments ended, she became jaundice and required stents. One thing about plastic stents that my mom experienced was that fat that the clot off easily. Watch your mom for fever, chills, nausea, vomitting, abd pain. If symptoms occur, please call MD immediately. My mom actually became septic and required a week in the ICU because of the infection.
It’s a tough road, but with you by her side, she will be stronger knowing that you are there for her, by her side, every step.
I often felt so helpless, seeing my mom suffer as she did. This is a terrible disease and I hope they can find more effective treatment.
I hope your mom has fun in Vegas, hopefully bring back from $$$.Hi Peggy,
I am truly sorry that your brother is going through this. My mother had plastic stents. We were given option for metal vs plastic. We were told that the metal stents had decreased chance of clogging only because they were larger in diameter. But the bad thing about the metal stents we were told were that once they placed them, it would be very difficult to remove because of the tissue that grows over them and the stents become imbedded. MD stated that if the metal stents become occluded, they could either try to clean it out or place a plastic stent within the metal stent. But because the occlusions were too narrow, metal stents were too large and was not an option for my mom. So, she ended up with 2 plastic stents and one external/internal stent. The problem is the infection that occurs. I truly believe, it was the multiple infections that followed the stent placements that caused my mother’s condition to worsen so quickly. She was admitted with sepsis, spent several days in the ICU and after that her condition quickly worsened. We were told that infection following stent placement was a given. That it would be very difficult to prevent infection. She was on numerous IV antibiotics at home.
The external/internal stent we flushed twice a day, so it decreased the potential for occlusions, but my mom went through much pain with each change.
First, Cipro was the choice for treating the infections, but later stopped working. She was on zosyn and another IV antibiotic at home.
Her stents were changed every 6 to 8 weeks due to blockage and infection.I hope they can find a solution for your brother.
Hi Linamize,
My mother had 2 internal stents and one external stent. She also had numerous infections and was in the ICU one time with sepsis. After the sepsis, that’s when her condition worsened. The infections took a toll on her. increased weakness, loss of appetite, muscle mass,etc… I think the infections ultimately lead to her passing rather than the cancer itself. She could not have the metal stents because of the narrow passage. The internal plastic stents continued to clot off due to sludge, resulting in infections. It was awful. She too was on IV ATB at home. We were torn because without the stents, the bili levels, ammonia levels would increase, but with the stents, infection… it’s a tough situation.My mom left us almost 4 months ago. I miss her everyday. I still have the sweat shirt she wore the last. I have it hanging on my stairwell. I keep it covered so I don’t lose her scent. Work keeps me busy. My dad is trying hard to keep it together, but he has his moments. He dreams about her a lot. He says in his latest dreams, my mom keeps leaving and he chases after her. He says she is probably trying to give him a message to let her go and live his life. He is now living by himself and everything in the house reminds him of mom. It is hard, but take it day by day.
