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amother
OP
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 Sun, Oct 15 2023, 8:48 am
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Been treated with chemo amd other life saving surgeries and treatments for over ten years. AMA
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amother
Clematis
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Sun, Oct 15 2023, 8:54 am
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Is your rare disease in addition to cancer? Is your rare disease being treated with chemo and other treatments typically used for cancer, despite you not actually having cancer? Or is your rare disease a form of cancer?
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amother
Birch
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Sun, Oct 15 2023, 9:14 am
| amother Clematis wrote: | | Is your rare disease in addition to cancer? Is your rare disease being treated with chemo and other treatments typically used for cancer, despite you not actually having cancer? Or is your rare disease a form of cancer? |
Asking the same
Have a child On chemo for a noncamcer dx
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amother
OP
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Sun, Oct 15 2023, 9:17 am
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It's a hematological disease which causes cancer and multi system disease.
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amother
Burgundy
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Sun, Oct 15 2023, 9:26 am
How old were you when you were diagnosed?
What were your symptoms?
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amother
Tiffanyblue
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Sun, Oct 15 2023, 10:00 am
I'm so sorry.
Did you have a hard time getting the correct diagnosis?
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amother
Seafoam
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Fri, Oct 20 2023, 5:14 pm
How did you find good doctors ?
Were all treatments decided by them or did they give you a choice ?
Were there any insurance issues ?
Did you get second opinions ? Did you ever fly accross the country (for one) or in a different country ?
Did you try alternative medicine ?
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amother
Cerulean
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Sat, Oct 21 2023, 6:29 pm
What kind of doctors care are you under?
Is it something to do with eosinophils?
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amother
Tomato
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Sat, Oct 21 2023, 7:29 pm
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amother
Burgundy
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Sat, Oct 21 2023, 8:19 pm
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You have not responded, op. I hope you’re feeling okay.
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amother
OP
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Sat, Oct 21 2023, 8:47 pm
| amother Cerulean wrote: | What kind of doctors care are you under?
Is it something to do with eosinophils? |
Oncology for most part. Nothing to do with eosiniphils.
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amother
OP
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Sat, Oct 21 2023, 8:51 pm
| amother Seafoam wrote: | How did you find good doctors ?
We called referral agencies. We did lots of our own on line research. We searched for others worldwide with same disease.
Were all treatments decided by them or did they give you a choice ?
There were limited treatment options. We tried them all including all clinical trials.
Were there any insurance issues ?
HUGE. Biggest issue when dealing with rare diseases.
Did you get second opinions ? Decord, third , eights and tenth. Did you ever fly accross the country (for one) or in a different country ? We went to many states and countries as most docs never heard of this.
Did you try alternative medicine ? | yes. They were all bogus with promises and only made things worse. We worked with reputable practitioners. Was a bad experience and with diseases they've never heard of they should just refer back to docs. Very dangerous route to advise.
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amother
OP
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Sat, Oct 21 2023, 8:52 pm
| amother Seafoam wrote: | How did you find good doctors ?
We called referral agencies. We did lots of our own on line research. We searched for others worldwide with same disease.
Were all treatments decided by them or did they give you a choice ?
There were limited treatment options. We tried them all including all clinical trials.
Were there any insurance issues ?
HUGE. Biggest issue when dealing with rare diseases.
Did you get second opinions ? Decord, third , eights and tenth. Did you ever fly accross the country (for one) or in a different country ? We went to many states and countries as most docs never heard of this.
Did you try alternative medicine ? | yes. They were all bogus with promises and only made things worse. We worked with reputable practitioners. Was a bad experience and with diseases they've never heard of they should just refer back to docs. Very dangerous route to advise.
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amother
OP
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Sat, Oct 21 2023, 8:54 pm
| amother Burgundy wrote: | How old were you when you were diagnosed?
What were your symptoms? |
30s. Fatigue. Awful pain. Neuro symtoms. Organ dysfunction and failure. Labs showed extreme blood discrepancies, Chemistry off, renal function off, liver off, other protiens out of whack and progressive physical symptoms. It was clear something was wrong but took over a year and MANY doctors to figure it out.
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amother
Burgundy
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Sat, Oct 21 2023, 9:09 pm
What is your daily life like these days?
Who has been the most supportive?
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