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advice for family

8 years 11 months ago #35084 by sara.anne
You mentioned that your sister is resistant to Hospice, so it will be difficult, I know, but this would be the best thing for her. And people DO leave hospice. I have had first-hand experience, both with my mom and my dad. Since she is alone, they would provide nursing and even other care providers AND, more important, they are really up on pain meds. At least you might talk to a Hospice social worker.

Our thoughts are with you at this difficult time.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 11 months ago #35079 by Patricia
There's only so much platinum drugs a body will allow you to take so a clinical trial is the only thing on the horizon. And i've mentioned 2 of them. You might ask MD Anderson if they are incorporating the Japanese trial....they might be.
Here's what i found at MD Anderson
http://www.mdanderson.org/education-and-research/research-at-md-anderson/early-detection-and-treatment/research-programs/spores/bladder-cancer-spore/clinical-trials/index.html
pat

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8 years 11 months ago #35078 by Julian
Hi Patricia. Thank you so much for responding. She is getting her treatment locally in the suburbs but has a specialist at a hospital in the city. I think you are right that her diagnosis is not good, but I don't really have a sense of how much time she has. She talked about maybe going to Anderson. She's resistant to go to a "clinical trial" because it has the association that she's in a bad stage of the cancer, which she is... but it seems like there are some clinical trials that are pretty promising. It has been hard to keep her eligible for her chemo because her platelets have been low, though. It seems like that's a really common issue for stage IV.

I've been reluctant to bring up hospice because she is so afraid of it. But as someone said to a friend of mine, you can go into hospice, and if your prognosis changes, you can get out. Why not have access to all of the help you can get? I really, really hate seeing her in so much pain. She is really tough and not inclined to tell her doctors how much it hurts-- maybe because she doesn't want to hear bad news from them? I will try to find a time to gently suggest there might be a pain specialist at the hospital. And that radiation can help. It does seem that people here have had some luck with that.

I feel weird about this, but I am trying to prepare myself for what might happen, and I can't really, because I have so little information. Does she have a year left? What if she has much less than that? As my friend says, "everyone is terminal, and there's no way to know when any of us will go," but I do wish I had a better sense of where things were. My sister is so tough, maybe too tough sometimes.

Thanks again, Patricia.

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8 years 11 months ago - 8 years 11 months ago #35076 by Patricia
Common Virus to kill Cancer 2 Months ago
Phase 111 trials in Calgary......this is very interesting.
www.dailyfinance.com/story/this-virus-could-be-the-answer-to-cancer/19344145/?icid=main

this is a phase 111 trial in Calgary....i wonder if they would consider trying it for bladder cancer?

also look what they are doing in Japan..its amazing.
http://www.urotoday.com/index.php?option=com_content&task=view_ua&id=2231741
you need to register to read this but its free. I wonder if any of the major cancer centers here are trying this. The results are pretty fabulous.
pat

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8 years 11 months ago - 8 years 11 months ago #35073 by Patricia
Oh Jules i don't envy your position. When you don't know what you're dealing with how do you deal with it especially if your sister does not want to deal with it. It sounds like she's been diagnosed with bladder cancer that has gone outside the bladder..to the kidneys and lungs does not suggest a favorable prognosis. She needs palliative care now. I mean there are trials out there but really no successfull second line of defense.


Was she at a major cancer center?
Absolutely she needs pain management and that can include radiation. There should be a pain management doctor somewhere in her vicinity.
You don't have much to go on. If she would just allow you to have access to her medical diagnosis...what with all the Hippa laws she really should do that and allow you to help her.
what part of the country is she in? Maybe we can get her to a top notch facility if she hasn't given up.
I feel for you........Pat

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8 years 11 months ago #35071 by Julian
Hi. My sister has advanced bladder cancer-- so far it has spread to her kidneys and her lungs. She is a very private person and so she is not always telling us everything. She's also understandably very scared and it doesn't seem she is always asking her doctors for all the information. She has told them she doesn't want to know about prognosis.

She did two kinds of chemotherapy, both of which did not produce a response. Not sure if she did MVAC and cisplatin, or GC-- she didn't tell me when I asked and I'm not sure she's totally clear on it. They've said she should maybe look at clinical trials but they are not giving her a lot of information, maybe in part because she is saying she doesn't want to know.

Her urine is being redirected. She seems quite weak to me and is losing a lot of weight. Her mind is as sharp as ever but I worry about the amount of anxiety she is dealing with.

My biggest concern is that she seems to be in a lot of pain, and that pain is not controlled. She has had chronic UTIs, was on Vicodin for a while, and then Oxycontin and the suppositories. She is still in pain and is having a lot of trouble digesting things, has become hesitant to take the pain pills. I think they should give her a Fentanyl patch, but what do I know?

I want to know how best to help her. Most of all, I want her pain managed, which isn't happening now. I am worried about her quality of life and don't know how to advise her-- whether she should travel for clinical trials, whether some treatments might be more helpful than others (like radiation to reduce swelling in her pelvic area, where she has a lot of pain). I don't have much information and I'm not in a position to get it. I want to respect her privacy and still help her as much as I can.

Also, we live at opposite ends of the state and I know she won't tell me when she really needs help. She lives alone and I am afraid that things will be really rough and she won't let me know so that I can be there with her. I want to give her indepedence and privacy, and also I need to be at work when I can, but she comes first, always. I am having a hard time figuring out what my role is and what I can do to help her.

Advice, anyone?

Jules

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