Welcome to this week's Beacon Weekly Polls. This week’s questions are about how long it's been since your diagnosis. This poll is specifically for patients with multiple myeloma.
Separate polls are being run this week for patients with monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (see the links below in this posting).
A few clarifications:
First, as indicated in the question, you should only respond if your most recent myeloma-related diagnosis, prior to any treatment, was multiple myeloma -- not smoldering multiple myeloma or MGUS.
Patients are diagnosed with multiple myeloma, also called active or symptomatic myeloma, if they have shown any of the common myeloma-related symptoms, such as elevated calcium levels in the blood, anemia, bone disease, or kidney damage.
Second, if you are a caregiver or spouse of of someone with myeloma, feel free to answer on their behalf.
Once you have answered the question above, add whatever comments you feel might be relevant in the discussion below.
As mentioned above, we are also currently running polls for MGUS and smoldering myeloma patients. If you currently have MGUS or smoldering myeloma, please vote in the appropriate poll. And, of course, feel free to check out the results of all of the polls:
Smoldering myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-smoldering-diagnosis-2014-t3356.html
MGUS:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-mgus-diagnosis-2014-t3355.html
We previously ran each of these polls before, but are running them again so that Beacon readers have access to the latest information and can compare it to the previous data.
Previous polls (January 2013):
Active multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-myeloma-diagnosis-2013-t1607.html
Smoldering multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-smoldering-diagnosis-2013-t1606.html
MGUS:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-mgus-diagnosis-2013-t1605.html
Forums
7 posts
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Re: Weekly Poll - How Long Since Your Myeloma Diagnosis? - 2
How about a question that asks: How long have you been in remission? And then, define remission clearly? I would have answered that one!!!
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Josephine D.
Re: Weekly Poll - How Long Since Your Myeloma Diagnosis? - 2
Hi Josephine,
We've actually done several polls similar to what you've suggested. This link will take you to a list of them.
In general, if you want to see if a weekly poll has been carried out about a topic you're interested in, just enter the keywords "weekly poll [topic]" into the forum search box, and hit return. (Don't include the quotation marks when you follow this example, and substitute for [topic] whatever subject you're interested in, for example "transplant", "Velcade", etc.)
This link, for example, takes you to a list of search results you get by doing a search on the keywords "weekly poll transplant".
We've actually done several polls similar to what you've suggested. This link will take you to a list of them.
In general, if you want to see if a weekly poll has been carried out about a topic you're interested in, just enter the keywords "weekly poll [topic]" into the forum search box, and hit return. (Don't include the quotation marks when you follow this example, and substitute for [topic] whatever subject you're interested in, for example "transplant", "Velcade", etc.)
This link, for example, takes you to a list of search results you get by doing a search on the keywords "weekly poll transplant".
Re: Weekly Poll - How Long Since Your Myeloma Diagnosis? - 2
Hi Beacon Staff,
I noticed that the current poll is really skewed for the 1-2 year group. I want to point out to viewers of that data that they need to be aware that the majority of people using the Myeloma Beacon will do so in the first couple of years after diagnosis.
BTW, Beacon Staff you do a wonderful job.
Cheers,
Libby
I noticed that the current poll is really skewed for the 1-2 year group. I want to point out to viewers of that data that they need to be aware that the majority of people using the Myeloma Beacon will do so in the first couple of years after diagnosis.
BTW, Beacon Staff you do a wonderful job.
Cheers,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Weekly Poll - How Long Since Your Myeloma Diagnosis? - 2
It has been 6 months since my diagnosis of multiple myeloma. I was told that I had MGUS 6+ years ago.
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maryann witte
Re: Weekly Poll - How Long Since Your Myeloma Diagnosis? - 2
I was diagnosed 20 months ago with stage 3 multiple myeloma. Underwent a SCT at 5 months and remained in remission until this month. Now unsure if I am able to have a second transplant or will go on a maintenance dose of Revlimid. I am having difficulty finding out any stats on the survival rates specific to stage 3 patients after having had a SCT. All results I have seen do not differentiate between stages. From my understanding I could have had multiple myeloma for many years before being diagnosed. If this is true then a person who is diagnosed with stage 1 and survives for another 10 years after transplant,should not be compared with a stage 2 or 3 for survival years.
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Deb B
7 posts
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