Husbands visit at MD Anderson -not any options-what to expect?
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Ali….tough question to answer as this disease is so individual. Some patients have terrific responses to the very same treatment that others don’t.
These are the NCI recommended guidelines:
Unresectable, Recurrent, or Metastatic Intrahepatic Bile Duct CancerTreatment of unresectable, recurrent, or metastatic intrahepatic bile duct cancer may include the following:
Stent placement as palliative treatment to relieve symptoms and improve quality of life.
External or internal radiation therapy as palliative treatment to relieve symptoms and improve the quality of life.
Chemotherapy.
A clinical trial of external radiation therapy combined with hyperthermia therapy, radiosensitizer drugs, or chemotherapy.
Check the list of NCI-supported cancer clinical trials that are now accepting patients with stage III intrahepatic bile duct cancer, stage IV intrahepatic bile duct cancer and recurrent intrahepatic bile duct cancer. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. Talk with your doctor about clinical trials that may be right for you. General information about clinical trials is available from the NCI website.
Bile Duct Cancer (Cholangiocarcinoma) Treatment (PDQ®)–Patient Version
Treatment Options for Bile Duct Cancer
Updated: December 22, 2016Hugs
Marionwhat type of treatment is best for Intrahepatic CC Stage IV ?
which chemo protocol is good for Intrahepatic CC Stage IV ?
how can we tell if chemotherapy is working ?thank you in advance
Dear Bonnie, so sorry again to read about Gary. I don’t know what I would have done without Hospice as they watched, guided, eased up the journey and actually gave us time to just be together. Teddy called it our “honeymoon”. Most importantly is to keep discomfort at bay. I had them bring in a hospital bed and set it up in the living room where it was brighter and airier and they could have more room working around Teddy. It also made things more comfortable when visitors came over. One more thing, the hospital bed makes it easier for a patient to get in and out of bed. Keep on taking each day at a time, remember to be kind to yourself and know that we are all here for you!
Thank you all. Gary was in the hospital again. Sepsis, one of the metal stents had moved because tumor had grown (just put in 3 weeks ago). Dr repositioned it and added 3rd. Home now. Will be calling hospice this week to meet and find out what is available. I never thought I could live by concentrating on one day at a time. Thank you all for your supporting
BonnieDear Bonnie,
So sorry to hear. Having been through something similar recently, I can only say that the advice and support I got from this site helped me so much. Lainy’s 10 signs note really helped my family cope as we knew what to expect. Check under this discussion board, the section on supportive, palliative and hospice care. There is a lot of posts from caregivers which will help.
As everybody else above has said, please know you have friends and support on this site and reach out whenever you want
Take care
RanganiDear Bonnie,
Not much either that I can add to what the others have said to you, but wanted to let you know that I am keeping both you and Gary in my close thoughts right now. Please know as well that we are all here for you. Please let us know how things go on Monday if you can.
Hugs,
Gavin
Thank you all for the words of support. Our oncologist in New Orleans had told us this but wanted us to come to MDA. I read dr notes this morning, so I am prepared for the worst. All Gary is doing is sleeping most of the day. Will let you all know after Monday’s apt. Again, thanks so much. Bonnie
Dear Bonnie,
No advice to add to all that has already been said, but want you to know I am thinking of you and Gary and hoping for the best. As Marion said, we are in this together.
Hugs,
DarlaBonnie….so sorry to hear this. Given the developments it appears that things are moving extraordinarily fast. You mention confusion, make sure to mention to the physician as the stents could be clogging again. Your physician may order a blood test in order to check rising ammonia levels related to hepatic encephalopathy. In any case, symptoms can be controlled, dear Bonnie, don’t hesitate from contacting the healthcare provider.
Palliative care does not necessarily mean hospice, but in either case, a healthcare team should be involved. You may want to check with your insurance in regards to coverage for either services.
We are here to help you through this as well, dear Bonnie. Don’t hesitate from reaching out to us, we are in this together.Hugs
MarionBonnie,
I hope for options to be presented on Monday that give a plan for if not a cure, a way forward. With this cancer, we are told that there is no sure besides surgery, but there are more who are starting to survive with CC as a chronic disease.
My Dad’s lung cancer has spread to his pancreas. He is too weak for chemo, so we met with hospice last night. It was a meeting we were dreading, but made us feel better. They will ease into it with a nurse visiting once a week, and they may have a chaplain visit. Also, Mom seemed open to a volunteer maybe sitting with Dad for an hour a week so she can take a walk. They said they try to match the volunteers for respite care with the patient, so Dad will probably get a vet to come visit. It will give them 24/7 access his team. Being on hospice doesn’t mean they can’t leave the house and can even take a vacation if Dad feels up to it.
I hope Monday goes well and will be thinking of you.
Take care,
CatherineDear Bonnie, I am so very sorry to read about your husband and am wondering if you have sought out a 2nd opinion. If all that can be done has been done I highly recommend you get in touch with Home Hospice. They will see you both through to the end of the journey. I do have a list of 10 signs the end is near and if you email me through the site (just click on my name to the left of this post and it will take you right to the email) I will send you the list. My Teddy followed it pretty closely except for #10. They ordered a hospital bed that I put in the living room as it was open and airy and the big TV was there. Also there was more room for the nurses to work around the bed. The bed is comfortable and the side rails are good for pulling themselves up and out. We also ordered a walker so he would not fall. Is he on any meds that could be causing the falling and confusion? Or he could have an infection. You will get through this as you never know how strong you are until “strong” is the only choice you have! You are not alone we are all here with you.
After fighting with insurance for 2 months, we finally had dr visit today. Dr Sharff basically told us what our oncologist had told us: not ressectable, no radiation. Chemo not option as curative & is reluctant to do it for any other reason. He has charossis of the liver and is also very weak. Having CT scan tomorrow. Discuss options on Monday
Gary has been extremely fatigues, unstable-falling a few times & confused. This seems to be progressing fast in the last couple of weeks. I’m not sure how much time he has left. He sleeps most of the time, but doesn’t complain with too much pain & is able to eat at least one good meal a day
He was diagnosed in June after biopsy in May. We’re told he had about a year left. Can someone tell me what is likely to happen? The dr did say she would put us in touch with palliative care & hospice. It’s hard to watch this once vital man go down so quickly I’m focusing on one day at a time. Thanks
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