Dan
Could I ask you a private question regarding multiple myeloma MDs at Scottsdale Mayo? I could really use your advice.
Thanks.
Forums
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Report on Myeloma Trials at UAMS / Arkansas
Hi Arizonan,
I would be happy to offer my advice (for what its worth) but don't know a way to have a private conversation through this forum. I assume you want it to remain confidential.
If others know a way please let me know.
Thanks, Dan
I would be happy to offer my advice (for what its worth) but don't know a way to have a private conversation through this forum. I assume you want it to remain confidential.
If others know a way please let me know.
Thanks, Dan
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Dan in Phoenix
Re: Report on Myeloma Trials at UAMS / Arkansas
You can do a private message. Look for it on top where it say new message
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Jackie - Name: Jackie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 56
Re: Report on Myeloma Trials at UAMS / Arkansas
Or go into your profile. Down at the bottom there is also another place to post private messages
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Jackie - Name: Jackie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 56
Re: Report on Myeloma Trials at UAMS / Arkansas
Dan
You arent signed in so we cant chat directly. But if you click on my frog, you can send me a private message with your email.
Thanks
You arent signed in so we cant chat directly. But if you click on my frog, you can send me a private message with your email.
Thanks
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Report on Myeloma Trials at UAMS / Arkansas
Dan - apparently you cant send messags unless you are signed in. So my email is davidfinkelstein110 at yahoo.com
Thanks
Thanks
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Report on Myeloma Trials at UAMS / Arkansas
Hi - yes, I too would like to talk with Dan. Sounds like Dan, Arizonan, and myself all live in AZ (I live in north central). I was diagnosed with Ig MGUS last winter and July blood test was the same range as from Dec 2011. Mayo Scottsdale assessed my BMA (trisomic 7) for AZ Oncology in Jan 2012 and I question if I should be followed by Mayo instead. No CRAB criteria. Does it make a difference if a general oncologist follows MGUS or should a multiple myeloma center be a better choice? If I transition to multiple myeloma, yes, I'm heading to Mayo. Thanks, Diane
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dianem
Re: Report on Myeloma Trials at UAMS / Arkansas
First thanks everyone, I sent David a private email.
Hi Diane,
I would consider MGUS premyeloma and probably get followed at Mayo- Scottsdale. Only a percentage of MGUS progress every year. One important caveat is that Mayo isn't in-network for all insurances which can be a huge consideration. Luckily for me they are in network.
Glad to hear you have no CRAB symptoms. A general oncologist isn't specialized enough but AZ Oncology has HemeOncs who should at least be able to monitor you to make sure you don't progress.
A myeloma specialist has more experience and can get a sense that things are progressing before even the most sensitive tests do. As others have said, simple blood tests like free light chain (and perhaps the new free heavy chain) tests are a good way to monitor your disease.
Mayo Scottsdale offers their own prognostic assay like the UAMS MyPRS test for myeloma which might predict your risk of progression. The trisomy 7 test was basically just a FISH test which is sort of 1990 technology- new test use gene arrays to quantify ~20,000 genes which is the most advanced science available today.
The test is based on a bone marrow aspirate (BMA) and there needs to be enough plasma cells present. Did your last BMA have more than 5% plasma cells? The test isolates these cells and analyzes the genetics to look for risk factors. Your AZ Oncology doctors can ask about sending Mayo your sample or Signal Genetics offers the MyPRS test at Little Rock so everyone can get the benefit. Get preapproval from your insurance first (the test costs several thousand dollars) but the information from either Mayo or UAMS can be priceless.
These are just my opinion, maybe others have thoughts that could help Diane.
Hope this helps Diane and Happy Thanksgiving. Dan
Hi Diane,
I would consider MGUS premyeloma and probably get followed at Mayo- Scottsdale. Only a percentage of MGUS progress every year. One important caveat is that Mayo isn't in-network for all insurances which can be a huge consideration. Luckily for me they are in network.
Glad to hear you have no CRAB symptoms. A general oncologist isn't specialized enough but AZ Oncology has HemeOncs who should at least be able to monitor you to make sure you don't progress.
A myeloma specialist has more experience and can get a sense that things are progressing before even the most sensitive tests do. As others have said, simple blood tests like free light chain (and perhaps the new free heavy chain) tests are a good way to monitor your disease.
Mayo Scottsdale offers their own prognostic assay like the UAMS MyPRS test for myeloma which might predict your risk of progression. The trisomy 7 test was basically just a FISH test which is sort of 1990 technology- new test use gene arrays to quantify ~20,000 genes which is the most advanced science available today.
The test is based on a bone marrow aspirate (BMA) and there needs to be enough plasma cells present. Did your last BMA have more than 5% plasma cells? The test isolates these cells and analyzes the genetics to look for risk factors. Your AZ Oncology doctors can ask about sending Mayo your sample or Signal Genetics offers the MyPRS test at Little Rock so everyone can get the benefit. Get preapproval from your insurance first (the test costs several thousand dollars) but the information from either Mayo or UAMS can be priceless.
These are just my opinion, maybe others have thoughts that could help Diane.
Hope this helps Diane and Happy Thanksgiving. Dan
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Dan in Phoenix
Re: Report on Myeloma Trials at UAMS / Arkansas
Thanks Dan, I checked the lab report and had less than 5 percent abn plasma cells from the BMA. Yes, our insurance does allow us to use Mayo, so glad that is an option. My MGUS was found during a blood test for Vitamin D status. Last month when I had my annual thyroid check my endocrinologist mentioned that several of her patients also had MGUS and it is more common with those who have immune issues such as low thyroid or diabetes. Diane
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dianem
Re: Report on Myeloma Trials at UAMS / Arkansas
Interesting and alarming paper;
I looked up the website where this UAM trial paper was published, science-fraud.org, and at first I thought it was a joke website. Very childish. Is it a legitimate place to post scientific papers? Wnt Mor Wang is one headline, Cancer Chang China Chew is another. If they are a serious organization, then maybe I'm just getting old and grouchy and don't get the humor.
The person who submitted the paper is an ex-employee of MIRT, which isn't the most unbiased source.
Since some of these papers are 7 years old or older, why did it take so long for somebody to point out these problems? Where were those Peers who are supposed to be Reviewing these Journals?
It is so one sided and so strange that I'd like to hear the other side. And silence of one side doesn't mean they're guilty as we often see in the legal world.
@Suzie-I have a family member who has a disease which is about 20% as common as myeloma. You can imagine how difficult it is to find information on treating this disease. There used to be a website where experts would occasionally come in and voluntarily answer questions. It was truly a Godsend to have this website. One patient decided to take it upon himself to slander these volunteer doctors and researchers. One by one, the doctors stopped posting to the website. After a year, the website was shut down thanks to the threat of legal action. Myself and thousands of others would sure hate for that to happen to the Beacon.
I only read your posts after they were edited and I was stunned that even those were allowed.
Another member of the cult, Stann
I looked up the website where this UAM trial paper was published, science-fraud.org, and at first I thought it was a joke website. Very childish. Is it a legitimate place to post scientific papers? Wnt Mor Wang is one headline, Cancer Chang China Chew is another. If they are a serious organization, then maybe I'm just getting old and grouchy and don't get the humor.
The person who submitted the paper is an ex-employee of MIRT, which isn't the most unbiased source.
Since some of these papers are 7 years old or older, why did it take so long for somebody to point out these problems? Where were those Peers who are supposed to be Reviewing these Journals?
It is so one sided and so strange that I'd like to hear the other side. And silence of one side doesn't mean they're guilty as we often see in the legal world.
@Suzie-I have a family member who has a disease which is about 20% as common as myeloma. You can imagine how difficult it is to find information on treating this disease. There used to be a website where experts would occasionally come in and voluntarily answer questions. It was truly a Godsend to have this website. One patient decided to take it upon himself to slander these volunteer doctors and researchers. One by one, the doctors stopped posting to the website. After a year, the website was shut down thanks to the threat of legal action. Myself and thousands of others would sure hate for that to happen to the Beacon.
I only read your posts after they were edited and I was stunned that even those were allowed.
Another member of the cult, Stann
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Stann
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