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Re: Cardiac amyloidosis - anyone else have it?
Hi Dan in Phoenix - can you email me? Program not allowing me to send an email to you. I also live Phoenix and wanted to ask your thoughts on various oncologists for MGUS monitoring. Thanks, Diane
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Dianem
Re: Cardiac amyloidosis - anyone else have it?
Hi Diane - The only way two users on the forum can message with one another is if they are both registered users. Since neither you nor Dan appear to be registered users, you can't send messages to one another (or, for that matter, see each other's email addresses).
Even if you are a registered user, you have to log in first to be able to message with another registered user. But, even if you log in, you won't be able to send a message to a user who is not registered. Also, some users choose to opt out of receiving messages from other users.
Finally, we ask that people not put their email messages in forum postings, to prevent the forum from becoming a source of email address for people who send spam email.
We respect people's right to privacy and therefore allow posting and reading of the forum without any requirement for registration. However, there are certain advantages to registering, such as those we just described above.
Even if you are a registered user, you have to log in first to be able to message with another registered user. But, even if you log in, you won't be able to send a message to a user who is not registered. Also, some users choose to opt out of receiving messages from other users.
Finally, we ask that people not put their email messages in forum postings, to prevent the forum from becoming a source of email address for people who send spam email.
We respect people's right to privacy and therefore allow posting and reading of the forum without any requirement for registration. However, there are certain advantages to registering, such as those we just described above.
Re: Cardiac amyloidosis - anyone else have it?
Hi Diane,
It looks like we can't communicate directly. If you are in Phoenix, you should know about a myeloma patient advocacy organization that I serve on the Board of Directors.
This past weekend we just had our 10th Annual "Living with Myeloma" Conference with top speakers from across the country and had ~350 patients and caregivers. We had two top researchers from MD Anderson, Dr. Robert Kyle, Mayo Clinic Rochester, Dr. Fritz Van Rhee, Little Rock, AK and Dr. Ken Anderson, Dana Farber/Harvard among others.
You can find us by Googling "myeloma" and "Arizona" and we should be near the top of the search results. We strive to help patients in the Southwest with just these kinds of questions, with the caveat that we can provide information and contacts, but the decisions are for you and your doctors to decide. There are no simple or "correct" answers for this question.
Did you by any chance attend last weekend's conference?
All my best,
Dan.
It looks like we can't communicate directly. If you are in Phoenix, you should know about a myeloma patient advocacy organization that I serve on the Board of Directors.
This past weekend we just had our 10th Annual "Living with Myeloma" Conference with top speakers from across the country and had ~350 patients and caregivers. We had two top researchers from MD Anderson, Dr. Robert Kyle, Mayo Clinic Rochester, Dr. Fritz Van Rhee, Little Rock, AK and Dr. Ken Anderson, Dana Farber/Harvard among others.
You can find us by Googling "myeloma" and "Arizona" and we should be near the top of the search results. We strive to help patients in the Southwest with just these kinds of questions, with the caveat that we can provide information and contacts, but the decisions are for you and your doctors to decide. There are no simple or "correct" answers for this question.
Did you by any chance attend last weekend's conference?
All my best,
Dan.
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Dan in Phoenix
Re: Cardiac amyloidosis - anyone else have it?
Thanks Dan - I just signed up the myeloma advocacy network and no didn't attend the conference last week that is about 15-20 minutes from my home. Hoping to connect with you through the network. Since diagnosed with MGUS, I learned our neighbor's dad had multiple myeloma and met another woman with MGUS - like me, she would like to learn more about our condition. I visit AZ Oncology once/year and the meeting is very brief. This webpage is where I learn the most about MGUS. Diane
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Dianem
Re: Cardiac amyloidosis - anyone else have it?
Thanks Diane,
Your specific question came up during the Q&A portion of the conference and there was a divergence of views by these top experts -- as you might expect.
I'd say the consensus was that there are some MGUS patients who are "high risk" and might benefit from early therapeutic intervention. Who these are and what treatment to choose is still an ongoing discussion. The good thing is that these top experts are thinking about/grappling with these same questions.
I'd suggest more frequent follow-up then yearly for MGUS. At least for simple blood test like free light chains maybe quarterly. You can reach me through the site; just send an email and ask it to be forwarded to me.
The Arizona Myeloma Network is a very small grass roots organization but we have 2 part time employees and many very dedicated volunteers who keep it running.
I hope to hear from you soon,
Dan
Your specific question came up during the Q&A portion of the conference and there was a divergence of views by these top experts -- as you might expect.
I'd say the consensus was that there are some MGUS patients who are "high risk" and might benefit from early therapeutic intervention. Who these are and what treatment to choose is still an ongoing discussion. The good thing is that these top experts are thinking about/grappling with these same questions.
I'd suggest more frequent follow-up then yearly for MGUS. At least for simple blood test like free light chains maybe quarterly. You can reach me through the site; just send an email and ask it to be forwarded to me.
The Arizona Myeloma Network is a very small grass roots organization but we have 2 part time employees and many very dedicated volunteers who keep it running.
I hope to hear from you soon,
Dan
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Dan in Phoenix
Re: Cardiac amyloidosis - anyone else have it?
Hi Dan in Phoenix,
I just recently learned of your organization! Thanks for creating a website. All the very best to you.
Just a quick question regarding your last post: Were the experts talking about early therapeutic intervention (I realize they did not recommend it, just it is a topic of discussion amongst many of the top experts in the field) for those with high risk MGUS or with high risk smoldering multiple myeloma?
I have read info about this possibility for those with high risk smoldering myeloma (and there are clinical trials already in place for that group), but I haven't come across anything for those with high risk MGUS.
Thanks if you can further share the info you gleaned at your group's recent conference.
Dana H
I just recently learned of your organization! Thanks for creating a website. All the very best to you.
Just a quick question regarding your last post: Were the experts talking about early therapeutic intervention (I realize they did not recommend it, just it is a topic of discussion amongst many of the top experts in the field) for those with high risk MGUS or with high risk smoldering multiple myeloma?
I have read info about this possibility for those with high risk smoldering myeloma (and there are clinical trials already in place for that group), but I haven't come across anything for those with high risk MGUS.
Thanks if you can further share the info you gleaned at your group's recent conference.
Dana H
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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: Cardiac amyloidosis - anyone else have it?
Hi Dana,
The consensus seemed to be that there is a continuum of disease from 1) benign MGUS that will never progress to 2) more malignant MGUS that will progress eventually to 3) low risk SMM that will never progress or progress only after many years to 4) finally high risk SMM that has a high probability of progressing in the near term. They even differed on what constitutes advanced MGUS vs SMM.
There is no early intervention for MGUS right now, but the researchers were talking about different types of MGUS and the comparative risks of progression to full myeloma. That's why I suggested shorter follow-up than yearly for Diane. My worry is she could potentially shift from MGUS to myeloma over a year.
As you can imagine, there could be overlap between these diseases and differences even with what constitutes the different categories. Plus, often at diagnosis you don't know if the MGUS has been there for years or only months. Biology is never clear cut.
Some researchers think plasma cell Index (how fast the cells are replicating) matter most, others look at the % of plasma cells in the bone marrow, others look at FLC or B2M as blood markers, and others look for genetic markers as prognostic indicators.
My point was that myeloma researchers are thinking about how to predict who will progress and eventually try to intervene earlier. The thought is that, at an earlier stage, the disease might be cured, but this is only an assumption today. The discussion was very good for the patients at the conference to hear because they have to think about and discuss the same issues with their own doctors.
There's no right answer here.
I hope this is more clear.
Thanks and have a great day,
Dan
The consensus seemed to be that there is a continuum of disease from 1) benign MGUS that will never progress to 2) more malignant MGUS that will progress eventually to 3) low risk SMM that will never progress or progress only after many years to 4) finally high risk SMM that has a high probability of progressing in the near term. They even differed on what constitutes advanced MGUS vs SMM.
There is no early intervention for MGUS right now, but the researchers were talking about different types of MGUS and the comparative risks of progression to full myeloma. That's why I suggested shorter follow-up than yearly for Diane. My worry is she could potentially shift from MGUS to myeloma over a year.
As you can imagine, there could be overlap between these diseases and differences even with what constitutes the different categories. Plus, often at diagnosis you don't know if the MGUS has been there for years or only months. Biology is never clear cut.
Some researchers think plasma cell Index (how fast the cells are replicating) matter most, others look at the % of plasma cells in the bone marrow, others look at FLC or B2M as blood markers, and others look for genetic markers as prognostic indicators.
My point was that myeloma researchers are thinking about how to predict who will progress and eventually try to intervene earlier. The thought is that, at an earlier stage, the disease might be cured, but this is only an assumption today. The discussion was very good for the patients at the conference to hear because they have to think about and discuss the same issues with their own doctors.
There's no right answer here.
I hope this is more clear.
Thanks and have a great day,
Dan
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Dan in Phoenix
Re: Cardiac amyloidosis - anyone else have it?
Hi Dan,
Your response was very helpful. Thanks so much for taking the time to share all of this with me and the other Beacon readers! You are right as there is no right answer just yet, there is not yet consensus, but I know they are working on trying to figure this all out, hopefully sometime soon.
Thanks again for sharing all of this.
All the very best to you,
Dana H
Your response was very helpful. Thanks so much for taking the time to share all of this with me and the other Beacon readers! You are right as there is no right answer just yet, there is not yet consensus, but I know they are working on trying to figure this all out, hopefully sometime soon.
Thanks again for sharing all of this.
All the very best to you,
Dana H
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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: Cardiac amyloidosis - anyone else have it?
Claire thanks for the reply and I am sending you my best wishes and positive vibes and hope that you to continue to improve.
Dan, looks like you are dong a great job over there in Phoenix. I hope I find something similar in the UK. I am a great believer that knowledge is power, and people like you are providing us with that knowledge. Much thanks to you and those like you.
Dan, looks like you are dong a great job over there in Phoenix. I hope I find something similar in the UK. I am a great believer that knowledge is power, and people like you are providing us with that knowledge. Much thanks to you and those like you.
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