I live in California. Just been diagnosed with smoldering myeloma. She said I had unusual type that has light chains and mentioned amyloidosis.
I was diagnosed because of heart problems which they fixed with ablation. Doc says I have weird protein in heart. She wants to treat me with Velcade and steroids.
Don't understand all this and wish there was someone to talk about it with.
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Re: Diagnosed as smoldering, may have amyloidosis
Hi Susan,
Sorry to hear about your diagnosis.
From your brief description, it sounds like your doctor is suggesting treatment for your amyloidosis condition, which is a condition that can sometimes develop in multiple myeloma patients. One generally doesn't treat smoldering myeloma until it progresses to the next stage known as symptomatic multiple myeloma (although the amyloidosis treatments also work on the early stage of multiple myeloma known as smoldering multiple myeloma).
The "weird protein in your heart" that your doc referred to is probably the amyloid protein itself that is building up in your organs (including your heart), as a result of having amyloidosis. The "unusual type of light chain" that your doc is referring to is also likely the result of the amyloidosis condition. See:
"Multiple Myeloma-Associated Amyloidosis – What Every Patient Should Know," The Myeloma Beacon, September 15, 2010.
To start to better understand your smoldering multiple myeloma condition, you may want to look here:
Multiple Myeloma Resources here at The Myeloma Beacon
In any case, I would strongly recommend that you seek out a top multiple myeloma specialist to work with you (multiple myeloma specialists are also familiar with treating amyloidosis). This is a tricky disease and there is no substitute for having a multiple myeloma specialist that lives and breathes this disease on a daily basis, and is doing research in the field of multiple myeloma.
If you tell us where you are in California, folks can likely point you to an institution or a specific doc. You can also find a list of some of the institutions that have have myeloma specialists here:
"Multiple myeloma treatment centers" - list here at The Myeloma Beacon.
Best of luck to you. Let us know if we can help in any way.
Sorry to hear about your diagnosis.
From your brief description, it sounds like your doctor is suggesting treatment for your amyloidosis condition, which is a condition that can sometimes develop in multiple myeloma patients. One generally doesn't treat smoldering myeloma until it progresses to the next stage known as symptomatic multiple myeloma (although the amyloidosis treatments also work on the early stage of multiple myeloma known as smoldering multiple myeloma).
The "weird protein in your heart" that your doc referred to is probably the amyloid protein itself that is building up in your organs (including your heart), as a result of having amyloidosis. The "unusual type of light chain" that your doc is referring to is also likely the result of the amyloidosis condition. See:
"Multiple Myeloma-Associated Amyloidosis – What Every Patient Should Know," The Myeloma Beacon, September 15, 2010.
To start to better understand your smoldering multiple myeloma condition, you may want to look here:
Multiple Myeloma Resources here at The Myeloma Beacon
In any case, I would strongly recommend that you seek out a top multiple myeloma specialist to work with you (multiple myeloma specialists are also familiar with treating amyloidosis). This is a tricky disease and there is no substitute for having a multiple myeloma specialist that lives and breathes this disease on a daily basis, and is doing research in the field of multiple myeloma.
If you tell us where you are in California, folks can likely point you to an institution or a specific doc. You can also find a list of some of the institutions that have have myeloma specialists here:
"Multiple myeloma treatment centers" - list here at The Myeloma Beacon.
Best of luck to you. Let us know if we can help in any way.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Diagnosed as smoldering, may have amyloidosis
Hi Multibilly: Thanks for the info. Will check it out. I live in Oceanside,CA. Burning up with the heat wave out here. Could use some rain. 
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Susan B.
Re: Diagnosed as smoldering, may have amyloidosis
Hi Susan B.,
In southern California, probably the largest group of myeloma and amyloidosis specialists is probably at the City of Hope cancer center. Also, there have been people here in the forum who have good experiences at USC, where there are one or two specialists, and UCLA and UCSD also are choices you'll probably want to consider.
In Los Angeles, there is also Dr. James Berenson, a well known myeloma specialist. I don't know, however, to what extent he works regularly with myeloma patients with amyloidosis. One reason I'm not sure about this is because I think stem cell transplants are standard therapy for myeloma patients with amyloidosis, and Dr. Berenson does not do stem cell transplants.
If you don't mind flying somewhere for a consultation, then you might want to consider either the Mayo Clinic in Phoenix or MD Anderson in Houston. Both have lots of myeloma and amyloidosis specialists and lots of experience.
The Mayo Clinic has information on the diagnosis and treatment of amyloidosis. You may find the information helpful if you confirm that your diagnosis is smoldering myeloma with amyloidosis.
http://www.msmart.org/amyloid.pdf
Let us know if you have any more questions we can answer, and please keep us updated on what you find out and how things are going.
In southern California, probably the largest group of myeloma and amyloidosis specialists is probably at the City of Hope cancer center. Also, there have been people here in the forum who have good experiences at USC, where there are one or two specialists, and UCLA and UCSD also are choices you'll probably want to consider.
In Los Angeles, there is also Dr. James Berenson, a well known myeloma specialist. I don't know, however, to what extent he works regularly with myeloma patients with amyloidosis. One reason I'm not sure about this is because I think stem cell transplants are standard therapy for myeloma patients with amyloidosis, and Dr. Berenson does not do stem cell transplants.
If you don't mind flying somewhere for a consultation, then you might want to consider either the Mayo Clinic in Phoenix or MD Anderson in Houston. Both have lots of myeloma and amyloidosis specialists and lots of experience.
The Mayo Clinic has information on the diagnosis and treatment of amyloidosis. You may find the information helpful if you confirm that your diagnosis is smoldering myeloma with amyloidosis.
http://www.msmart.org/amyloid.pdf
Let us know if you have any more questions we can answer, and please keep us updated on what you find out and how things are going.
Re: Diagnosed as smoldering, may have amyloidosis
Susan,
Cheryl's recommendations are good ones.
I'm a patient of Dr Berenson and he does also work with amyloidosis patients. Having said that, he does indeed eschew transplants. Other multiple myeloma doctors will generally tend to be more transplant-centric in their treatment approach. I'm not saying that one approach or the other is right...and every multiple myeloma / amyloidosis patient's situation is very different. You need to figure that out for yourself as you dive into this disease.
If your insurance will cover it, I might suggest getting an opinion from both Dr. Berenson and another doctor from one of the facilities that Cheryl recommends. Worse case, you will be out a copay for a doctor visit. But that way, you will have a pretty healthy spectrum of opinions on how to proceed.
Best of luck to you.
Cheryl's recommendations are good ones.
I'm a patient of Dr Berenson and he does also work with amyloidosis patients. Having said that, he does indeed eschew transplants. Other multiple myeloma doctors will generally tend to be more transplant-centric in their treatment approach. I'm not saying that one approach or the other is right...and every multiple myeloma / amyloidosis patient's situation is very different. You need to figure that out for yourself as you dive into this disease.
If your insurance will cover it, I might suggest getting an opinion from both Dr. Berenson and another doctor from one of the facilities that Cheryl recommends. Worse case, you will be out a copay for a doctor visit. But that way, you will have a pretty healthy spectrum of opinions on how to proceed.
Best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
6 posts
• Page 1 of 1