This is my first post so I apologize if I seem like a newbie.
My dad, 87 1/2 years old, was diagnosed with multiple myeloma. Did 10 rounds of radiation. Has terrible back pain to the point where it has crippled him, only feeling relief lying down. Had a spine doc review his MRI (had no bedside manner) and gave no options for pain. We also have to follow up with chemo treatment, Revlimid, Decadron, and bone infusion monthly.
Not trying to be mean, but since I know nothing about this terrible diagnosis, I was under the impression from his oncologist that he could have a few more years. Does anyone have feedback as to weighing pros and cons of treatment or refusal of treatment benefits?
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Re: Pros and cons of refusing treatment after diagnosis?
Hi nybor61,
So sorry both your dad and you are going through this.
There is so much that needs to be looked at and discussed with you both to make the best decisions with him. There is a lot of clinical and historical information that would effect this discussion. How healthy was/is your dad otherwise for example? Before the myeloma diagnosis your dad's age cohort had an average all comer life expectancy of almost 5 years, to about 92.5 - but that was before the fractures (?) and this new diagnosis. (I say fractures assuming that was why he had the XRT and the spine doc.) In cohort studies those alone unfortunately lower life expectancy significantly in the elderly.
Other conditions and other abnormal labs will also color his treatment and choices.
What efforts and meds have been used for pain control?
What are his preferences?
Using Atul Gawande's five questions to ask near the end of life:
The discussion of chemotherapy should include someone addressing whether it will help his pain and his goals.
My own very physically fit and much younger husband's myeloma was diagnosed because of pain which did let up in the second month of treatment. He did not have any fractures, however. Unfortunately I don't even have anecdotal experience for you for older myeloma patients but others here might.
You have nothing to apologize for and are not being mean. You are being a thoughtful son with concerns and questions. You are correct that weighing pros and cons are important.
I wish you both strength and clarity.
So sorry both your dad and you are going through this.
There is so much that needs to be looked at and discussed with you both to make the best decisions with him. There is a lot of clinical and historical information that would effect this discussion. How healthy was/is your dad otherwise for example? Before the myeloma diagnosis your dad's age cohort had an average all comer life expectancy of almost 5 years, to about 92.5 - but that was before the fractures (?) and this new diagnosis. (I say fractures assuming that was why he had the XRT and the spine doc.) In cohort studies those alone unfortunately lower life expectancy significantly in the elderly.
Other conditions and other abnormal labs will also color his treatment and choices.
What efforts and meds have been used for pain control?
What are his preferences?
Using Atul Gawande's five questions to ask near the end of life:
- What is your understanding of where you are and of your illness?
- What are your fears or worries for the future?
- What are your goals and priorities?
- What outcomes are unacceptable to you? What are you willing to sacrifice and not?
- What would a good day look like?
The discussion of chemotherapy should include someone addressing whether it will help his pain and his goals.
My own very physically fit and much younger husband's myeloma was diagnosed because of pain which did let up in the second month of treatment. He did not have any fractures, however. Unfortunately I don't even have anecdotal experience for you for older myeloma patients but others here might.
You have nothing to apologize for and are not being mean. You are being a thoughtful son with concerns and questions. You are correct that weighing pros and cons are important.
I wish you both strength and clarity.
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: Pros and cons of refusing treatment after diagnosis?
No treatment could lead to dialysis due to renal failure, broken bones, more pain.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Pros and cons of refusing treatment after diagnosis?
Thank you for the replies. Very informative information. I wish you both well. This forum is great outlet for information.
Re: Pros and cons of refusing treatment after diagnosis?
Nybor 61,
Surprisingly, my wife's initial treatment with Revlimid and dexamethasone did wonders for her hip pain. At first she couldn't get out of bed without my help.
Best regards,
John
Surprisingly, my wife's initial treatment with Revlimid and dexamethasone did wonders for her hip pain. At first she couldn't get out of bed without my help.
Best regards,
John
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JohnBoy5456 - Name: John
- Who do you know with myeloma?: Janet
- When were you/they diagnosed?: 6/15/15
- Age at diagnosis: 64
Re: Pros and cons of refusing treatment after diagnosis?
Glad to get some positive feedback for such a terrible disease.
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