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Newly Discovered multiple myeloma/stage/second opinion question
Hello, three weeks ago I learned I had multiple myeloma after I had a BMB. My primary care doctor sent me to a hematologist because my CBC showed my WBC lower than normal. I am 49, feel fit and robust. My bone survey was normal. My blood work and 24 hour urine test show abnormal levels of proteins. My beta 2 microglobulin is low as are calcium, albumin, etc. I am glad the hematologist urged me to have the BMB, but he is very curt, a little disorganized and doesn't give specific numbers. I have a graduate degree and do legal research for a living, so I diligently and thoroughly read every publication from the Myeloma Foundation, Medifocus, etc. that I could find. I asked him what stage I was at using the Durie system and the newer international system and he couldn't give me a straight answer other than he thinks it is more than smoldering. I mentioned CRAB and he told me my kidneys are fine and I have no end organ damage, etc. He even talked about treatment with Remlivid, etc. which I found rather premature. I live near Philadelphia which has a major cancer center at the University of Pennsylvania. I am thinking of going there for a full work up. Any insights about staging, second opinions would be helpful. Thanks.
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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
Newly Discovered multiple myeloma/stage/second opinion quest
Dear Terry,
As you note in your post, the distinction between asymptomatic (smoldering) myeloma and symptomatic myeloma is a crucial one. The standard of care for someone with smoldering disease is close observation, although there are on-going studies looking at early intervention with drugs like Revlimid (lenalidomide) for those with smoldering disease at higher risk of progression to symptomatic disease. Risk factors for progression of smoldering myeloma to symptomatic disease include the degree of elevation of the M-spike, the extent of marrow involvement, and the presence of an abnormal serum free light chain ratio.
The Mayo group recently published a letter to the editor in the New England Journal of Medicine evaluating what happens to patients with smoldering myeloma who have more substantial disease burden in the marrow (more than 60% involvement of their marrow space with myeloma -- web address:
http://www.nejm.org.libproxy.lib.unc.edu/doi/full/10.1056/NEJMc1106428 ).
In that unusual circumstance, patients progressed to symptomatic disease quite quickly, suggesting that this group may need to be treated like symptomatic myeloma from the beginning. Skeletal imaging can also be considered (for example, MRI, bone mineral density testing) to better determine if the disease is smoldering or symptomatic.
In contrast, a diagnosis of symptomatic myeloma mandates immediate treatment. Based on what you have posted, you do not have the typical features of symptomatic disease (are you anemic? I did not see that information in your post). Realize, though, that the CRAB criteria are not infallible. They serve as a useful tool for helping physicians sort out smoldering from symptomatic disease but there are patients who have evidence of organ damage that do not technically meet criteria for symptomatic disease by CRAB criteria.
You need to get a good answer as to why your oncologist feels you have more than smoldering disease. Given the nuances and complexities of your situation, if you are uncertain about the answer, it would be very reasonable to go get another opinion. You live in a city with a lot of good myeloma physcians! Good luck!
Pete V.
As you note in your post, the distinction between asymptomatic (smoldering) myeloma and symptomatic myeloma is a crucial one. The standard of care for someone with smoldering disease is close observation, although there are on-going studies looking at early intervention with drugs like Revlimid (lenalidomide) for those with smoldering disease at higher risk of progression to symptomatic disease. Risk factors for progression of smoldering myeloma to symptomatic disease include the degree of elevation of the M-spike, the extent of marrow involvement, and the presence of an abnormal serum free light chain ratio.
The Mayo group recently published a letter to the editor in the New England Journal of Medicine evaluating what happens to patients with smoldering myeloma who have more substantial disease burden in the marrow (more than 60% involvement of their marrow space with myeloma -- web address:
http://www.nejm.org.libproxy.lib.unc.edu/doi/full/10.1056/NEJMc1106428 ).
In that unusual circumstance, patients progressed to symptomatic disease quite quickly, suggesting that this group may need to be treated like symptomatic myeloma from the beginning. Skeletal imaging can also be considered (for example, MRI, bone mineral density testing) to better determine if the disease is smoldering or symptomatic.
In contrast, a diagnosis of symptomatic myeloma mandates immediate treatment. Based on what you have posted, you do not have the typical features of symptomatic disease (are you anemic? I did not see that information in your post). Realize, though, that the CRAB criteria are not infallible. They serve as a useful tool for helping physicians sort out smoldering from symptomatic disease but there are patients who have evidence of organ damage that do not technically meet criteria for symptomatic disease by CRAB criteria.
You need to get a good answer as to why your oncologist feels you have more than smoldering disease. Given the nuances and complexities of your situation, if you are uncertain about the answer, it would be very reasonable to go get another opinion. You live in a city with a lot of good myeloma physcians! Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Newly Discovered multiple myeloma/stage/second opinion q
Thank you , Doctor. A couple of weeks ago my WBC was 3.0 and my hemoglobin 12.9. So, does this qualify as anemia? Also, albumin and creatinine were normal. Bone marrow was 40 t0 50% infiltrated. I wish I lived in your neck of the woods! Thanks again.
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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 Discovered multiple myeloma/stage/second opinion q
Terry,
The first thing I would do would be to get copies of all of your test records. While I so far have MGUS, I did find out that the diagnosis was made in 2004 and I was just told in 2011. So I have obtained copies of all tests that the doctor hadn't sent to me. I see that the hematologist sent a letter to my PCP regarding my anemia; but apparently did not send the SPEP and immunofixation tests results. So its possible that the PCP didn't know of the MGUS until later.
And if you don't hit it off with the hematologist, find another one - preferably at an institution that has a Myeloma dept.
Good luck.
Kay
The first thing I would do would be to get copies of all of your test records. While I so far have MGUS, I did find out that the diagnosis was made in 2004 and I was just told in 2011. So I have obtained copies of all tests that the doctor hadn't sent to me. I see that the hematologist sent a letter to my PCP regarding my anemia; but apparently did not send the SPEP and immunofixation tests results. So its possible that the PCP didn't know of the MGUS until later.
And if you don't hit it off with the hematologist, find another one - preferably at an institution that has a Myeloma dept.
Good luck.
Kay
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Kay - Name: Kay Wilson
- Who do you know with myeloma?: SMM
- When were you/they diagnosed?: 2014
- Age at diagnosis: 72
Re: Newly Discovered multiple myeloma/stage/second opinion q
Dear Terry,
A hemoglobin of 12.9 g/dL in someone your age would likely qualify as mild anemia, but not rising to the level of symptomatic disease. The degree of marrow involvement is considerable, though, and the lowish white blood cell count could be a subtle, early indicator that your marrow is not happy with the presence of myeloma. The information you have presented does not necessarily rise to the level of symptomatic disease by CRAB criteria, but the level of disease is of concern. I would query your oncologist as to why they feel you have symptomatic disease. If you have smoldering disease, I would consider MRI imaging of your spine and/or bone mineral density testing to look for subtle evidence of bone damage missed by your skeletal survey. If you wind up with a diagnosis of smoldering disease after the dust settles, you will definitely need close follow-up. As before, if you are uncertain about the diagnosis or need for therapy, getting another opinion is always a reasonable option.
Good luck and take care!
Pete V.
A hemoglobin of 12.9 g/dL in someone your age would likely qualify as mild anemia, but not rising to the level of symptomatic disease. The degree of marrow involvement is considerable, though, and the lowish white blood cell count could be a subtle, early indicator that your marrow is not happy with the presence of myeloma. The information you have presented does not necessarily rise to the level of symptomatic disease by CRAB criteria, but the level of disease is of concern. I would query your oncologist as to why they feel you have symptomatic disease. If you have smoldering disease, I would consider MRI imaging of your spine and/or bone mineral density testing to look for subtle evidence of bone damage missed by your skeletal survey. If you wind up with a diagnosis of smoldering disease after the dust settles, you will definitely need close follow-up. As before, if you are uncertain about the diagnosis or need for therapy, getting another opinion is always a reasonable option.
Good luck and take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Newly Discovered multiple myeloma/stage/second opinion q
Thank you Kay and Dr. Voorhees for the great advice. I truly appreciate it. Regards. 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 Discovered multiple myeloma/stage/second opinion q
Terry,
I think you've gotten a lot of useful advice already. However, I just wanted to add that, if you haven't done so already, be sure to search this forum for additional discussions related to smoldering myeloma. Here's a quick link to the first page of such a search:
https://myelomabeacon.org/forum/search.php?st=0&sk=t&sd=d&sr=posts&keywords=smoldering+myeloma
Also, this tag page on the site,
https://myelomabeacon.org/tag/smoldering-multiple-myeloma/
is a useful link to all the Beacon news articles that have been published that focus, to one degree or another, on smoldering myeloma. I think you'll find it helpful.
Finally, there was a debate on the second day of the recent International Myeloma Workshop that focused on the question: Should smoldering myeloma patients be actively treated for their condition? See this summary of that day's presentations,
https://myelomabeacon.org/news/2011/05/05/imw-2011-multiple-myeloma-update-day-two/
particularly the end of the summary for a quick overview of that debate. I think it also will be useful for you to review
Good luck!
- Boris.
I think you've gotten a lot of useful advice already. However, I just wanted to add that, if you haven't done so already, be sure to search this forum for additional discussions related to smoldering myeloma. Here's a quick link to the first page of such a search:
https://myelomabeacon.org/forum/search.php?st=0&sk=t&sd=d&sr=posts&keywords=smoldering+myeloma
Also, this tag page on the site,
https://myelomabeacon.org/tag/smoldering-multiple-myeloma/
is a useful link to all the Beacon news articles that have been published that focus, to one degree or another, on smoldering myeloma. I think you'll find it helpful.
Finally, there was a debate on the second day of the recent International Myeloma Workshop that focused on the question: Should smoldering myeloma patients be actively treated for their condition? See this summary of that day's presentations,
https://myelomabeacon.org/news/2011/05/05/imw-2011-multiple-myeloma-update-day-two/
particularly the end of the summary for a quick overview of that debate. I think it also will be useful for you to review
Good luck!
- Boris.
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Newly Discovered multiple myeloma/stage/second opinion q
Thank you Boris for your insight and the links. I am so fortunate to have found the Myeloma Beacon. Three weeks ago, when I found out about my diagnosis, I wanted to crawl into a hole and die. Now, I feel I have a fighting chance and hope thanks to all of you! 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 Discovered multiple myeloma/stage/second opinion q
Hi, Terry-
One useful thing my onc told me about staging is that response is more important than stage. I've been in Stage 4 for about ten years, but have responded to some extent successfully to all treatments.The sign that I need new treatment is that I begin to lose energy and am able to do less and less. Tests then usually confirm that my cancer has started progressing.
Jim
One useful thing my onc told me about staging is that response is more important than stage. I've been in Stage 4 for about ten years, but have responded to some extent successfully to all treatments.The sign that I need new treatment is that I begin to lose energy and am able to do less and less. Tests then usually confirm that my cancer has started progressing.
Jim
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Jim
Re: Newly Discovered multiple myeloma/stage/second opinion q
Hi Terry,
My Dad was just diagnosed with multiple myeloma in December 2012. We live in Delaware, so I am curious where you decided to get your treatment. We have an appointment at Hopkins tomorrow and are prepared to go to Thomas Jefferson if we feel we need to. I'm just curious if you have any perspective.
I hope you are well,
Jen B
My Dad was just diagnosed with multiple myeloma in December 2012. We live in Delaware, so I am curious where you decided to get your treatment. We have an appointment at Hopkins tomorrow and are prepared to go to Thomas Jefferson if we feel we need to. I'm just curious if you have any perspective.
I hope you are well,
Jen B
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jbarrasso - Name: Jen B
- Who do you know with myeloma?: My Father
- When were you/they diagnosed?: 11/2012
- Age at diagnosis: 73
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