Hi
My name is Toni and I was diagnosed with MGUS on Feb. 15, 2012 after 2 months of tests. My story started with finding a high Sed rate in Nov. followed by protein in my urine. I then had I think every test there is, or so it seemed. Blood and urine tests, a bone marrow aspiration and biopsy, complete skeleton X-rays and a PET whole body scan. All the tests were normal except : a 24 hour urine that showed Kappa Light Chain elevation of 10.7 - urine light chains, Bence-Jones Protein. Blood tests - LDH of 215, serum free ight chains Kappa elevated at 2.95, Lambda normal at 1.30. Kappa/Lambda ratio elevated at 2.27, IGA normal but IGG and IGM below normal, and beta 2 microglobulin elevated at 2.7. I do not have an M-spike and my bone marrow was normal. I have no CRAB symptoms but am going to the kidney specialist in 2 weeks due to low potassium, high blood pressure and urine protein.
I get all my care at OHSU (Oregon Health Science University) in Portland, OR. My doctor is Dr. Emma Scott who specialized in Myeloma. She is new to OHSU. I also live just 3 hours from Seattle and the Fred Hutchinson Cancer Research Center. I have noticed that there is a doctor who answers question her from the Fred Hutchinson Center.
I am going to get followup in May mainly due to the fact that I was on 40-20 mg of Prednisone while all my tests were being taken. This was due to severe osteoarthritis which I suffer from. Dr, Scott feels that the Prednisone might have interferred with my test results.
It is nice to meet all of you. I hope I may join even tho I have MGUS. I pray for all of you daily, my faith is very important to me.
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8 posts
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: Newly diagnosed with MGUS
Hi Toni, thanks for sharing your story. One great thing in your case is that your bone marrow biopsy results were normal. Statistically speaking, I think the literature shows that your chances of progressing from MGUS to active myeloma are quite low. Good luck with everything and your prayers are quite welcome. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Newly diagnosed with MGUS
Hi Toni
You found the right Place. You will find tons of info and some extremely educated people who are more than willing to sure. I'm sorry to hear you have MGUS but , remember you don't have Myeloma. And you may never progress. Good Luck, Thanks for your Prayers and I will pray for you as well. Faith is very important to me too. Keep us posted
Art
You found the right Place. You will find tons of info and some extremely educated people who are more than willing to sure. I'm sorry to hear you have MGUS but , remember you don't have Myeloma. And you may never progress. Good Luck, Thanks for your Prayers and I will pray for you as well. Faith is very important to me too. Keep us posted
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Newly diagnosed with MGUS
Hi all,
I am so comfused after seeing the kidney specialist at OHSU this week. I had been having problems with low potassium and a mildly elevated B/P. My PMD thought that it was due to something else and not MGUS. I had questions for him reguarding my elevated Bence-Jones protein in my urine, my elevated Kappa light chain and my elevated K/L ratio and MGUS affecting the kidneys. Well he informed me that I was loosing K in my urine and I had the start of kidney tubular damage from the Bence-Jones protein. He also said he will monitor me closely. I asked if this damage increases would it be a different diagnosis than multiple myeloma. He said if I have increased kidney damage from Bence-Jones protein it would be active multiple myeloma but not to be worried as he works closely with my hematologist who specialized in multiple myeloma and they would take good care of me.
I am so confused. Maybe a doctor could answer or someone who had kidney damage with their MGUS or multiple myeloma? Am I now more at risk to go on to multiple myeloma with my kidney's showing the start of damage? My scans show I have no bone involvement and no anemia. I don't even have a M-spike, just elevated light chains in serum, and urine with a elevated K/L ratio, an elevated LDH, and low IGG and IGM.
Toni
I am so comfused after seeing the kidney specialist at OHSU this week. I had been having problems with low potassium and a mildly elevated B/P. My PMD thought that it was due to something else and not MGUS. I had questions for him reguarding my elevated Bence-Jones protein in my urine, my elevated Kappa light chain and my elevated K/L ratio and MGUS affecting the kidneys. Well he informed me that I was loosing K in my urine and I had the start of kidney tubular damage from the Bence-Jones protein. He also said he will monitor me closely. I asked if this damage increases would it be a different diagnosis than multiple myeloma. He said if I have increased kidney damage from Bence-Jones protein it would be active multiple myeloma but not to be worried as he works closely with my hematologist who specialized in multiple myeloma and they would take good care of me.
I am so confused. Maybe a doctor could answer or someone who had kidney damage with their MGUS or multiple myeloma? Am I now more at risk to go on to multiple myeloma with my kidney's showing the start of damage? My scans show I have no bone involvement and no anemia. I don't even have a M-spike, just elevated light chains in serum, and urine with a elevated K/L ratio, an elevated LDH, and low IGG and IGM.
Toni
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: Newly diagnosed with MGUS
Hi Tonil!
If I were you I would go to the Fred Hutchinson Center as fast as I could get an appointment with a multiple myeloma specialist there. I think you could be referring to Dr. Libby that answers questions here at the Beacon.
If I were you I would go to the Fred Hutchinson Center as fast as I could get an appointment with a multiple myeloma specialist there. I think you could be referring to Dr. Libby that answers questions here at the Beacon.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Newly diagnosed with MGUS
Thanks Suzierose,
I am seriously thinking of going for a second opinion with Dr. Libby in Seattle, it is only 3 1/2 hours away. I think alot of Portland, OR patients go up there for treatment of their multiple myeloma. I start not to worry because I only have MGUS and not active multiple myeloma and then I get sent to another doctor (this time the kidney specialist) and start to have major worry again! It is so hard, I can even see the proteins in my urine when I go because it is foamy, so that makes it hard to forget I have the Bence-Jones proteins in there maybe slowly harming my kidneys. I would really like to know what the cut off point is on how much kidney damage before they do treatment, but at the same time having to have treatment scares me to death!
Thanks for reading my post.
You all are in my prayers!
Toni
I am seriously thinking of going for a second opinion with Dr. Libby in Seattle, it is only 3 1/2 hours away. I think alot of Portland, OR patients go up there for treatment of their multiple myeloma. I start not to worry because I only have MGUS and not active multiple myeloma and then I get sent to another doctor (this time the kidney specialist) and start to have major worry again! It is so hard, I can even see the proteins in my urine when I go because it is foamy, so that makes it hard to forget I have the Bence-Jones proteins in there maybe slowly harming my kidneys. I would really like to know what the cut off point is on how much kidney damage before they do treatment, but at the same time having to have treatment scares me to death!
Thanks for reading my post.
You all are in my prayers!
Toni
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
Re: Newly diagnosed with MGUS
I understand your Anxiety Toni. I always feel good until I go to the Dr. I always leave there feeling like I have Active Myeloma even though I have Smoldering Myeloma. Im not too sure on what other indications of Renal failure are but I know creatinine is a big one. The criteria for diagnosing multiple myeloma is very clear. You have to have Monoclonal proteins present in your urine or Serum, More than 10 percent Plasma Cells in your Marrow and 1 or more of the "CRAB" criteria. Here is a link that will help you understand that .
http://myeloma.org/ArticlePage.action?tabId=1&menuId=334&articleId=3462&aTab=-1
Good Luck and Keep us Posted
Art
http://myeloma.org/ArticlePage.action?tabId=1&menuId=334&articleId=3462&aTab=-1
Good Luck and Keep us Posted
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Newly diagnosed with MGUS
Thanks Art and everyone who read my post. I had a nice exchange of emails with Dr. Libby who reassured me about MGUS and my possible kidney trouble. He also knows my Myeloma specialist Dr. Scott at OHSU and said she is excellent. This site is so privileged to have Dr. Libby and all the other experts to answer questions and provide information. I wish all you the best with your health. I keep you all in my thoughts and prayers.
Sincerely, ToniL with MGUS from Portland, OR
Sincerely, ToniL with MGUS from Portland, OR
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tonil - Name: Toni
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2/2012
- Age at diagnosis: 57
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