This week’s poll asks what is the hardest thing about living with smoldering multiple myeloma?
A few clarifications:
First, this poll is for anyone who has been diagnosed with smoldering multiple myeloma.
Second, if you are a caregiver or family member of a smoldering myeloma patient, feel free to answer on their behalf.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.
Especially, if you have selected "Other," please let us know what has been the hardest part of smoldering myeloma for you and why.
For those who are interested, we are also running the same poll for people with monoclonal gammopathy of undetermined significance (MGUS):
https://myelomabeacon.org/forum/weekly-poll-hardest-thing-about-mgus-t1903.html
We also previously ran a similar poll for people with multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-hardest-thing-about-myeloma-t1302.html
Forums
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Re: Weekly Poll - Hardest Thing About Smoldering Myeloma
I echo what John W wrote - waiting for the other shoe to drop and not having any way to know if it ever will or when it will - these thoughts pervade daily.
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Weekly Poll - Hardest Thing About Smoldering Myeloma
ALL of the above are equally hard because we really don't know what we're facing and when we're going to have to face it, while trying to remain positive and hopeful through all of it. The future is one big question mark. I don't know about anyone else, but the "watchful waiting" is quite unnerving, although necessary. It never really gives you a chance to rest your brain from thinking about it.
Re: Weekly Poll - Hardest Thing About Smoldering Myeloma
This survey is comforting to me as I often beat myself up for being a hypochondriac since I am only "smoldering" I agree that all of the above enter my mind from time to time. Good to know I am not alone and there is a place to seek some understanding. Smoldering since 2007. The longer we smolder it becomes less likely we will become "active." Only 1 md has said to me that smoldering is an active process. I think as individuals we know how we feel and what changes in our daily health just can't be from aging.
God bless all living with mgus, smoldering multiple myeloma, and active myeloma, and all cancers.
God bless all living with mgus, smoldering multiple myeloma, and active myeloma, and all cancers.
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Mary t
Re: Weekly Poll - Hardest Thing About Smoldering Myeloma
Good day! This poll is very relevant to me, having SMM, without any known damage to any organs, except to my immune system. I am under the "guard" of a wonderful hematologist/oncologist who specializes in multiple myeloma. I marked the option "Feeling ill, in pain, or constantly tired". It represents my biggest problem, especially since the doctors think that at this stage such symptoms are not usual. I do suffer from weakness, feeling unwell too often without actually being sick, and having pains in my bones. And yes, it does not seem to coordinate with age (I am 58). Thank you!
Re: Weekly Poll - Hardest Thing About Smoldering Myeloma
Being in a great deal of pain and very tired, I am disturbed most by the Oncology doctors refusing to treat my pain because I don't have "cancer". They refer me back to my primary care physician who referred me to the cancer center for anemia and other blood problems over a year ago.
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Rvwoodin - Name: Roger
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May2012 - SMM, multiple myeloma=Dec2013
- Age at diagnosis: 67
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