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Has anyone stopped treatment with bone metastasis?

Posted by momhascancer @momhascancer, Jun 14, 2023

My 84 year old mother with non-small cell lung cancer has decided to stop treatment. She was taking Tagrisso for past year and it stopped working. She was planning to give chemo a try but is too frail. When the Tagrisso stopped working she lost her appetite, has dry mouth, nausea, and is only drinking 2-3 ensures a day. She decided that she is in too much pain and has lived a good life- no interest in chemo.

Her last scan 2 months ago showed cancer in bones only, not the organs. Since that time her pain has increased, she is more tired, fatigued, confused, spends 90% on back in bed or on sofa. She doesn't want another scan due to her pain. She is taking morphine and oxycodone. What can we expect her deterioration to look like?

She is not on hospice yet as she wants support to have as much stamina and mobility, and clear headedness as possible. Which is little right now.

If her condition worsens or doesn't change- then she'll start hospice.

Any thoughts? Input?

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Jun 14, 2023

@momhascancer, This is such a tough time. I can’t image what you and your mother are going through. Hospice can be very helpful and should be involved, in my opinion. The earlier they are involved the better, it gives them a chance to get to know you both and they can help with symptom management and comfort.
I have a similar NSCLC mutation (ALK stage IV) and I’ve seen it progress very quickly. Two months is a significant amount of time with an aggressive cancer. Based on her symptoms at this time, the cancer has likely spread. Please take care of yourself, you can do that for her. And try to remember that there is a certain power for her in being able to have some say and control in refusing further treatments. Cancer takes so much from us.
Has her oncologist referred her to hospice?

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1 reply
momhascancer | @momhascancer | Jun 14, 2023
In reply to @lls8000 "@momhascancer, This is such a tough time. I can’t image what you and your mother are..." + (show)
@lls8000

@momhascancer, This is such a tough time. I can’t image what you and your mother are going through. Hospice can be very helpful and should be involved, in my opinion. The earlier they are involved the better, it gives them a chance to get to know you both and they can help with symptom management and comfort.
I have a similar NSCLC mutation (ALK stage IV) and I’ve seen it progress very quickly. Two months is a significant amount of time with an aggressive cancer. Based on her symptoms at this time, the cancer has likely spread. Please take care of yourself, you can do that for her. And try to remember that there is a certain power for her in being able to have some say and control in refusing further treatments. Cancer takes so much from us.
Has her oncologist referred her to hospice?

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Her oncologist referred her to hospice but the agency enrolled her in palliative care and home health- not hospice. I will talk to agency tomorrow as to why not hospice. She was planning to do radiation for pain management . I think that might be why. Thank you for your response.

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1 reply
nrocpop | @nrocpop | Jun 15, 2023
In reply to @momhascancer "Her oncologist referred her to hospice but the agency enrolled her in palliative care and home..." + (show)
@momhascancer

Her oncologist referred her to hospice but the agency enrolled her in palliative care and home health- not hospice. I will talk to agency tomorrow as to why not hospice. She was planning to do radiation for pain management . I think that might be why. Thank you for your response.

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When my mom had cancer, I found the palliative care and home health care to be great. When hospice came in, they really did not do anything additional for us. Maybe you should inquire with your palliative care nurses about whatever it is that you need. I think that many people are not familiar with the palliative care and home health combination. I used to think that was the same as hospice. I ended up really liking the palliative care team that came to her house.

I never did find the level of help that I felt like I needed. A local Council on Aging, or something of that sort, might have additional information for you. Before you switch to hospice, be sure you understand what they will provide. From your description, they never offered us any more than what you describe you already have.

I am sorry that my answer may seem rather disorganized. When you asked what her deterioration may look like, it took me back and it made me feel very upset. I would not recommend reading what hospice websites tell you about the end of life. I did not find that very accurate to what happened in our family. I do think it would be good if you could get someone to give you an honest answer about what the end of life may look like, so you could mentally and emotionally prepare yourself. I think that it may vary between people and it also may be a very difficult thing to talk about for many people (myself included). I hope you can find a doctor or nurse or someone that will give you honest answers.

REPLY
2 replies
momhascancer | @momhascancer | Jun 15, 2023
In reply to @nrocpop "When my mom had cancer, I found the palliative care and home health care to be..." + (show)
@nrocpop

When my mom had cancer, I found the palliative care and home health care to be great. When hospice came in, they really did not do anything additional for us. Maybe you should inquire with your palliative care nurses about whatever it is that you need. I think that many people are not familiar with the palliative care and home health combination. I used to think that was the same as hospice. I ended up really liking the palliative care team that came to her house.

I never did find the level of help that I felt like I needed. A local Council on Aging, or something of that sort, might have additional information for you. Before you switch to hospice, be sure you understand what they will provide. From your description, they never offered us any more than what you describe you already have.

I am sorry that my answer may seem rather disorganized. When you asked what her deterioration may look like, it took me back and it made me feel very upset. I would not recommend reading what hospice websites tell you about the end of life. I did not find that very accurate to what happened in our family. I do think it would be good if you could get someone to give you an honest answer about what the end of life may look like, so you could mentally and emotionally prepare yourself. I think that it may vary between people and it also may be a very difficult thing to talk about for many people (myself included). I hope you can find a doctor or nurse or someone that will give you honest answers.

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Thank you for sharing your thoughts and experience.

REPLY
stanr71 | @stanr71 | Jun 21, 2023
In reply to @nrocpop "When my mom had cancer, I found the palliative care and home health care to be..." + (show)
@nrocpop

When my mom had cancer, I found the palliative care and home health care to be great. When hospice came in, they really did not do anything additional for us. Maybe you should inquire with your palliative care nurses about whatever it is that you need. I think that many people are not familiar with the palliative care and home health combination. I used to think that was the same as hospice. I ended up really liking the palliative care team that came to her house.

I never did find the level of help that I felt like I needed. A local Council on Aging, or something of that sort, might have additional information for you. Before you switch to hospice, be sure you understand what they will provide. From your description, they never offered us any more than what you describe you already have.

I am sorry that my answer may seem rather disorganized. When you asked what her deterioration may look like, it took me back and it made me feel very upset. I would not recommend reading what hospice websites tell you about the end of life. I did not find that very accurate to what happened in our family. I do think it would be good if you could get someone to give you an honest answer about what the end of life may look like, so you could mentally and emotionally prepare yourself. I think that it may vary between people and it also may be a very difficult thing to talk about for many people (myself included). I hope you can find a doctor or nurse or someone that will give you honest answers.

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I have been curious about palliative care too. I am going with hospice now, but it seems like the doctor is cautious about the dose of oxycodone I am getting along with the morphine. I am worried about what will happen when things get real bad with the bladder cancer that I am dealing with. I need someone who will help, not be worried if I will get addicted or something else.

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Jun 26, 2023
In reply to @stanr71 "I have been curious about palliative care too. I am going with hospice now, but it..." + (show)
@stanr71

I have been curious about palliative care too. I am going with hospice now, but it seems like the doctor is cautious about the dose of oxycodone I am getting along with the morphine. I am worried about what will happen when things get real bad with the bladder cancer that I am dealing with. I need someone who will help, not be worried if I will get addicted or something else.

Jump to this post

@stanr71, generally the hospice nurses are very good with keeping patients pain free. I hope that you find the helpful support that you are looking for in future weeks and months.
It sounds like you’ve been in contact with hospice, are you getting the support that you feel you need?

REPLY
1 reply
momhascancer | @momhascancer | Jun 26, 2023

My mom transitioned to hospice last Friday. They prescribed her a steroid for bone pain right away and it has made a difference. I am relieved my mom agreed to to the switch to hospice they are providing her with what she needs. Thanks!

REPLY
stanr71 | @stanr71 | Jun 26, 2023
In reply to @lls8000 "@stanr71, generally the hospice nurses are very good with keeping patients pain free. I hope that..." + (show)
@lls8000

@stanr71, generally the hospice nurses are very good with keeping patients pain free. I hope that you find the helpful support that you are looking for in future weeks and months.
It sounds like you’ve been in contact with hospice, are you getting the support that you feel you need?

Jump to this post

The nurses were never a problem, they are as good as a person could ask for. The problem is a younger doctor who is closed minded when it comes to end of life issues and pain treatment. I just found out about a company who is one of the best according to someone who knows all of them in this area. I will be talking to one of them soon. So there is a still hope. Thank you for your concern. Take care.

REPLY
amyb5 | @amyb5 | Jun 28, 2023

I am so sorry for what you are going through. My sister passed away in 2018 from cancer. She battled it for 3 1/2 years. She decided to go on hospice 6 months before she died. It was a tremendous help, & relief. Her hospice nurse brought aides, recommended medications to help with symptoms, & really anticipated much that wouldn’t have occurred to us. She called her nurse her angel. They don’t provide all day care, I think that surprises people sometimes. I now have a second stage IV cancer, & am in palliative care, I will not hesitate to go into hospice care when I am there.

As far as your questions about what to expect, I’ve found several TedTalks on dying that have been very helpful to me. I wish I would have seen them before caring for my sister in her last week, it would have saved me from some guilty feelings. This one is excellent at explaining what to expect:

I’m not sure the link worked, if not it’s called: What Happens As We Die by Kathryn Mannix

Sending you & your Mom thoughts for peace, & comfort.

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