Okay, so I've had scalp to toes PET/CTs, MRI of my spine, skeletal surveys, DEXA scan, and a CT of my arm...
BUT, with my crappy low bone density and humeral lucent lesion, I want a whole body MRI (wbMRI)! Sounds much more efficient than all this piecemeal baloney. Plus no radiation!
Totally going to ask about this test at my next appointment in July.
Abstract from ASCO:
Longitudinal whole body MRI (wbMRI) in monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma.
Thursday, May 23, 2013
Tuesday, May 21, 2013
$100,000 here, $100,000 there...
As I am a patient at Dana Farber, I get a lot of newsletters and mail from them. One newsletter I received the other day had an article about Dr. R.
The basic gist of the article was that a multiple myeloma patient Dr. R has had (since 1993...!!!) recently decided to give him $100,000 to support his research. Wow!
The basic gist of the article was that a multiple myeloma patient Dr. R has had (since 1993...!!!) recently decided to give him $100,000 to support his research. Wow!
Wouldn't it be nice to be rich? :)
The husband of the patient was quoted saying, "Causes don't raise money. People do. It was our absolute pleasure to support him, and our only hope is that when others learn of our gift, they too might be inspired to give what they can."
Monday, May 6, 2013
Things that make you go, "hmmmm"
IMF Video:
Multiple Myeloma: International Myeloma Foundation : Live! The Boca Raton Patient & Family Seminar
If you click the link and zip ahead to ~1:31:54 you will hear Dr. R say something along the lines of...antibodies...there is an emerging role of vaccination for minimal disease...moving toward tailored treatment and the goal of a functional cure...driving quality of life. Something like that. ;)
THEN ...
This next part of the discussion made me really take notice. Dr. RK, who is like the godfather of MGUS, was asked, "How do you see things moving forward?"
His response, which I found very, very interesting was this:
I think in the long, long, future what we need to address is smoldering myeloma and MGUS which are the precursors of multiple myeloma. Something has happened to that patient that allows this clone of plasma cells to escape and then it is limited in the case of MGUS and then in the patient of smoldering myeloma it's limited a little later on...the body has allowed that clone to grow larger and then for for some unforeseen reason has stopped its progression as well. So I think ultimately, if we can get to the point where we can do something about the MGUS when it appears if we can do something to wipe out that clone at that point in time we wont have to worry about anything else and that's the ultimate long, long, term goal.
Hmmm.... well, okay... So, in the "long, long" future they need need to address smoldering myeloma and MGUS and the ultimate "long, long" term goal is to do something about MGUS when it first appears? Um, how about let's make this a goal now?! :)
I watched to the end of this video... some interesting discussion around MGUS and SMM.
Multiple Myeloma: International Myeloma Foundation : Live! The Boca Raton Patient & Family Seminar
If you click the link and zip ahead to ~1:31:54 you will hear Dr. R say something along the lines of...antibodies...there is an emerging role of vaccination for minimal disease...moving toward tailored treatment and the goal of a functional cure...driving quality of life. Something like that. ;)
THEN ...
This next part of the discussion made me really take notice. Dr. RK, who is like the godfather of MGUS, was asked, "How do you see things moving forward?"
His response, which I found very, very interesting was this:
I think in the long, long, future what we need to address is smoldering myeloma and MGUS which are the precursors of multiple myeloma. Something has happened to that patient that allows this clone of plasma cells to escape and then it is limited in the case of MGUS and then in the patient of smoldering myeloma it's limited a little later on...the body has allowed that clone to grow larger and then for for some unforeseen reason has stopped its progression as well. So I think ultimately, if we can get to the point where we can do something about the MGUS when it appears if we can do something to wipe out that clone at that point in time we wont have to worry about anything else and that's the ultimate long, long, term goal.
Hmmm.... well, okay... So, in the "long, long" future they need need to address smoldering myeloma and MGUS and the ultimate "long, long" term goal is to do something about MGUS when it first appears? Um, how about let's make this a goal now?! :)
I watched to the end of this video... some interesting discussion around MGUS and SMM.
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