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Advanced Stage Bladder Cancer

4 months 3 weeks ago #58394 by tlwjaw
I don' t think Keytruda was his problem. By deteriorate I guess I mean one week he was fine and carrying on a conversation, the next week he was incoherent like. He couldn't have a conversation. Some things he said made no sense at all. The nurses said it could be the Delaudid he was on for pain ( he had a pain pump in at this time) or possibly he had suffered another small stroke. He had had a small stroke back in April with no lasting problem from it. He couldn't walk without assistance, he only ate very little and we had to feed him when he did eat. Keep in mind though everyone is different. Your Mother may be coherent right to the end. I got so tired of people telling me how it went for them or someone they knew and for me not to worry. Walk in my shoes and tell me not to worry. Ugh. We did not have pallative care, just hospice. Once hospice starts they take over complete care of everything. You don't call 911 for help you call them. Nurses came every couple days, again that depends on each individuals needs. Could be more could be less. All meds came through hospice, equipment, etc. We had a hospital bed with a tray table like from the hospital that they brought out. They were wonderful to work with and took such good care of my husband. I hope this helps. I work in the medical field so sometimes I tend to ramble and use terms others may not understand. Hope this helps.

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4 months 3 weeks ago #58392 by snickted
Thank you - she won't do chemo b/c she's so weak. They said no trials for her because she doesn't meet criteria. :(
We do have palliative care - what is the difference as they said hospice is when we stop treatment?
When you say he began to deteriorate, is that being on Keytruda with regards to appetite?
Thank you again.

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4 months 3 weeks ago #58391 by tlwjaw
I believe they did his in between chemo and the start of immunotherapy. It helps to see if there is any match for clinical trials that might be available as well. Ask about pallative care vs hospice care to help you through this. We chose hospice care, which our doctor agreed with. First week he was good and the second week he began to deteriorate, they think possibly due to a mild stroke. But the nurses and all the people involved in his care were fantastic. You have someone available 24/7 to help you and trust me you will need that. Even if it's just to talk to or vent to. Please keep me updated on your journey. So sorry again that your family has to endure all this.

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4 months 3 weeks ago #58390 by snickted
Thank you for your reply. So far her appetite is terrible. She barely eats 800-1,000 calories a day. She's severely malnourished. I can't force her to eat and it breaks my heart to see her so weak. Nobody knows why her appetite is gone. She says she is fighting and wants to try and beat this. The odds sound horrible...without treatment, 6 months and with treatment, maybe a year. Like you said earlier, quality of life, not quantity. I don't want her last days spent in rehab or the hospital. Selfishly, I want her home and able to still do things with us. It seems like a long road right now...for what is left, if that makes sense.
They haven't spoken to us about genetic testing - what do they test for? Will they do that before or during treatment?
Thank you again for your replies and your prayers, greatly appreciated.

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4 months 3 weeks ago #58389 by tlwjaw
The good thing about Keytruda is there are not as many bad side effects like you have with chemo. The week after treatment he was usually just very tired and slept a lot. Push the fluids (Pedialite is good) Keytruda I think does affect their appetite. He suffered from severe constipation but that was more related to all the pain medicines than anything. I would not have done anything differently for him as far as treatment. His oncologist from IU Hospital in Indianapolis was fantastic and I have no doubt that he believed that Keytruda was going to work as we did. Unfortunately his genetic testing proved otherwise. He made the decision then that he did not want to go on like that and I supported his decision. I say as long as she is willing to fight let her. Listen to her, support her and take lots of notes. I kept a big binder with every test, surgery, office visits etc along with a recent medication list (because that changed weekly), copies of insurance cards, living will and anything you might think you would need should you need right away. I took this book with us everywhere we went.
You and your family are still in my prayers!!

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4 months 3 weeks ago #58388 by snickted
My heart aches for you and your family. The pain he must have been in..I'm truly very sorry. Thank you for replying. They want to start her on the Keytruda today. I want to be hopeful it will work but I'm not sure. She is already in a lot of pain and they can't seem to get an infection (or what they think is an infection) under control. They keep trying different antibiotics and nothing is bringing her white blood count down. She doesn't have an appetite and isn't eating much. Is there anything we should expect from her being on Keytruda? Is there anything I should watch out for? If you had to do it over again, what would you have done different, if anything?

Thank you again.

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