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Re: Mom diagnosed with myeloma - treatment not going well
Thanks for getting back to us Jane. You had me worried too! Please accept a big international 'hug' from all of us, in the US, Canada and Australia, who posted in. I hope that your mother can find the treatment plan that helps her to fight this disease, by consulting the experts she has made appointments with.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Mom diagnosed with myeloma - treatment not going well
Hi Jane,
It's taken me two days to respond to your post. multiple myeloma is such a scary disease, especially when you are first diagnosed and starting treatment. I can't imagine the stress it is causing you to feel that the doctors aren't being truthful with you!
As I read your posts, and what the docs were saying to your mom, I saw half-truths, and statements being taken out of context. It feels like your mom is just getting too much information thrown at her all at once! Unfortunately, not that unusual.
When EJ was diagnosed and the doc was explaining it to us, I understood exactly one word of his explanation -- "oncologist." At the time, EJ was too drugged up to understand what was being said, and I didn't want to upset him, so I had to wait until the doctor left and call my mother, who is a nurse practitioner to ask her about it!
It is hard for us caretakers to always go to appointments. If you can't go, ask your mom if it is okay for you to call her doctor to follow up, Make sure you understand the unique characteristics of her multiple myeloma and why she is considered high risk. Get copies of her tests so you understand her diagnosis and can track her progress.
And do your research. The Beacon is an excellent source of information, so is the International Multiple Myeloma Foundation website. Knowledge is power with multiple myeloma, and knowing this will help you with treatment decisions and manage expectations. I don't know anything about high-risk multiple myeloma, but there are many on this site who will can help answer your questions.
Please keep us informed on your mom's progress. We are all thinking of you.
Lyn
It's taken me two days to respond to your post. multiple myeloma is such a scary disease, especially when you are first diagnosed and starting treatment. I can't imagine the stress it is causing you to feel that the doctors aren't being truthful with you!
As I read your posts, and what the docs were saying to your mom, I saw half-truths, and statements being taken out of context. It feels like your mom is just getting too much information thrown at her all at once! Unfortunately, not that unusual.
When EJ was diagnosed and the doc was explaining it to us, I understood exactly one word of his explanation -- "oncologist." At the time, EJ was too drugged up to understand what was being said, and I didn't want to upset him, so I had to wait until the doctor left and call my mother, who is a nurse practitioner to ask her about it!
It is hard for us caretakers to always go to appointments. If you can't go, ask your mom if it is okay for you to call her doctor to follow up, Make sure you understand the unique characteristics of her multiple myeloma and why she is considered high risk. Get copies of her tests so you understand her diagnosis and can track her progress.
And do your research. The Beacon is an excellent source of information, so is the International Multiple Myeloma Foundation website. Knowledge is power with multiple myeloma, and knowing this will help you with treatment decisions and manage expectations. I don't know anything about high-risk multiple myeloma, but there are many on this site who will can help answer your questions.
Please keep us informed on your mom's progress. We are all thinking of you.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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