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Smoldering but ready to be snuffed out!

by djones on Thu Sep 19, 2013 3:34 pm

I am a 50 yr old female. I was having heart issues and diagnosed with cardiomyopathy. Having many blood tests done my cardiologists felt that i needed to be referred to an oncologists for an elevated M Protein Spike. Bone Marrow BX confirmed smoldering myeloma in May 2013. Still learning about all this complicated info. No treatment yet per my DR. wondering if we are on the right track. Live near UNC Chapel Hill Medical Center and Duke Medical Center ... Wondering if I should go for a second opinion. Also i have heard positive things about a place in Little Rock.

???

djones

Re: Smoldering but ready to be snuffed out!

by californiagal on Fri Sep 20, 2013 8:52 pm

I would get a 2nd opinion. I was just told I have smoldering myeloma as well and they have decided to hold off on treatment. I am calling Sloan Kettering Monday and seeking a 2nd opinion just to be sure. I am lucky that I work in a large pharmaceutical company and am surrounded by MDs. Many of them have been contacting me including the President of our Oncology division and told me to seek a 2nd opinion. I live in NW NJ so I will be heading into Manhattan. I wish you luck.

californiagal
Name: californiagal
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 11, 2013
Age at diagnosis: 52

Re: Smoldering but ready to be snuffed out!

by bri on Mon Sep 23, 2013 1:01 pm

Check out the National Institute of Health (NIH). They offer an aggressive approach to smoldering myeloma through clinical trials, rather than waiting for the inevitable and then treating. I will be starting treatment under a trial soon. Good luck.

bri

Re: Smoldering but ready to be snuffed out!

by Amelia on Sat Oct 05, 2013 5:18 am

I would also get a 2nd opinion can't hurt. I live in Maryland and went for my 2nd opinion to the facility in Little Rock, Arkansas (UAMS) very happy that I did excellent team of folks there. Btw considering retiring to NC how is the Chapel Hill facility?
Blessings,
Amelia

Amelia
Name: Amelia
Who do you know with myeloma?: Self
When were you/they diagnosed?: December 2011
Age at diagnosis: 52

Re: Smoldering but ready to be snuffed out!

by mebucko on Mon Oct 07, 2013 12:26 pm

I have MGUS and live in Chapel Hill, NC...great area lived here for over 20 years now. love the beache's

mebucko

Re: Smoldering but ready to be snuffed out!

by Dr. Peter Voorhees on Sun Oct 13, 2013 4:33 pm

Dear djones,

Has a cause for the cardiomyopathy been determined? Sometimes smoldering myeloma can be asosciated with a condition called AL amyloidosis, which can lead to cardiomyopathy. Additionally, the optimal management of smoldering myeloma is in a state of flux -- those at very high risk of imminent progression to symptomatic myeloma are proably best served with early intervention.

As a faculty member of UNC, I am highly biased, but we would be happy to see you here!

Take care and good luck!

Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor


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