Boy what a year it's been since my smoldering myeloma diagnosis! So grateful I found this site to help ease my fears. I have learned so much, but feel like I have so much to learn.
Next week I head back to Mayo, have not been there since June. I have a local onc who works closely with Mayo. I have had a good amount of testing done including a bone marrow biopsy (BMB), DEXA, bone survey, complete PET/CT, and later MRI of ribs when there was unexplained pain. On my schedule for next week is blood, 24 hr urine, and BMB.
My question is: How often do you do the others? Should I ask for another DEXA scan? Prefer not to do any more imaging unless there is a need. I know that, depending on results, other tests might be needed.
I am writing a list of questions to ask so I don't miss anything. Do I need to add to the list?
Thanks
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Re: Smoldering myeloma - frequency of testing?
Hi Smittie,
My doc likes to do all the blood lab test every 2-3 months. It gives me peace of mind getting updates from him in those periods of time, so it works for me. He's not a fan of 24-hour UPEPs, so I don't do that test.
In general, my local doc suggests skeletal surveys twice a year, but we are backing off of that number since I am looking pretty stable and I worry about all the radiation involved in skeletal surveys. I'm guessing I might get imaged every 9 months, or maybe even yearly, going forward. Note that one of my specialists is flat out against routine imaging unless there is bone pain or something obvious in the lab results that suggests the need for it. I did manage to get approval to substitute a PET/CT for a skeletal survey the last time I was imaged ... so I hope that I will be able to get at PET/CT every couple of years or so going forward. Getting a PET/CT as part of routine smoldering myeloma monitoring required that my doc's office challenged an initial rejection for approval by my insurance company.
I'm surprised that you are able to get a second bone marrow biopsy (BMB) after one year without your lab numbers deteriorating. I would personally welcome the opportunity to get a second BMB done (I only had one done at initial diagnosis), but my doc sees no value in it given my numbers are pretty stable. I also doubt that my insurance would cover a new BMB unless there was a significant change in my lab numbers.
DEXA scans are pretty low-dose radiation scans, so I'm not so worried about them. I have had two DEXAs done in two years, but I will probably wait at least 18-24 months from the last time I had one before thinking about getting another one, unless some of my lab numbers go south. I guess the frequency of DEXA testing would also depend on just how healthy your bone density is to begin with (mine is in quite good shape).
Hope this helps a bit.
My doc likes to do all the blood lab test every 2-3 months. It gives me peace of mind getting updates from him in those periods of time, so it works for me. He's not a fan of 24-hour UPEPs, so I don't do that test.
In general, my local doc suggests skeletal surveys twice a year, but we are backing off of that number since I am looking pretty stable and I worry about all the radiation involved in skeletal surveys. I'm guessing I might get imaged every 9 months, or maybe even yearly, going forward. Note that one of my specialists is flat out against routine imaging unless there is bone pain or something obvious in the lab results that suggests the need for it. I did manage to get approval to substitute a PET/CT for a skeletal survey the last time I was imaged ... so I hope that I will be able to get at PET/CT every couple of years or so going forward. Getting a PET/CT as part of routine smoldering myeloma monitoring required that my doc's office challenged an initial rejection for approval by my insurance company.
I'm surprised that you are able to get a second bone marrow biopsy (BMB) after one year without your lab numbers deteriorating. I would personally welcome the opportunity to get a second BMB done (I only had one done at initial diagnosis), but my doc sees no value in it given my numbers are pretty stable. I also doubt that my insurance would cover a new BMB unless there was a significant change in my lab numbers.
DEXA scans are pretty low-dose radiation scans, so I'm not so worried about them. I have had two DEXAs done in two years, but I will probably wait at least 18-24 months from the last time I had one before thinking about getting another one, unless some of my lab numbers go south. I guess the frequency of DEXA testing would also depend on just how healthy your bone density is to begin with (mine is in quite good shape).
Hope this helps a bit.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering myeloma - frequency of testing?
Multibilly,
This is not exactly on point to what you wrote below, but here is my question/ comment.
I have had quite a few bone marrow biopsies in the last seven months (required by the clinical trial in which I participated). I think two of the four did not reveal any cancer. However, associated blood tests did disclose some cancer, albeit low grade.
Given the patchiness of cancer in the bone marrow, what is the point of the BMB if, in fact, other tests adequately confirm the presence of myeloma cells?
I can understand that a BMB that indicates myeloma may serve a purpose, but the absence of myeloma on the biopsy / aspirated surely cannot lead one to feel any assurance.
What am I missing here?
This is not exactly on point to what you wrote below, but here is my question/ comment.
I have had quite a few bone marrow biopsies in the last seven months (required by the clinical trial in which I participated). I think two of the four did not reveal any cancer. However, associated blood tests did disclose some cancer, albeit low grade.
Given the patchiness of cancer in the bone marrow, what is the point of the BMB if, in fact, other tests adequately confirm the presence of myeloma cells?
I can understand that a BMB that indicates myeloma may serve a purpose, but the absence of myeloma on the biopsy / aspirated surely cannot lead one to feel any assurance.
What am I missing here?
Re: Smoldering myeloma - frequency of testing?
The reason I am interested in ongoing BMBs is primarily for the genetic study information (that is, have I developed any new mutations?). Given I currently have a pretty straightforward case of smoldering multiple myeloma, I wouldn't expect to have a big surprise with my BMPC percentage if my M-spike and free light chains (FLCs) didn't also change fairly significantly. But it would be nice to also know if the BMPC % rose significantly and unexpectedly on its own.
Of course, I could always run into the expected fluctuations of the BMPC % based on the hit-and-miss nature of BMBs. But I guess I'm assuming that they would always have enough material to run the genetic studies. BTW, when I got my BMB, they had the lab upstairs do a quick analysis of the sample before they let me get off the operating table. I'm not sure what the lab verified in a span of a few minutes, but they did analyze the sample for "something".
I also really didn't mind the non-sedated BMB procedure at all, but I can see that a BMB would be an unnecessary use of significant medical care dollars just to indulge my own personal curiosity at this stage.
Of course, I could always run into the expected fluctuations of the BMPC % based on the hit-and-miss nature of BMBs. But I guess I'm assuming that they would always have enough material to run the genetic studies. BTW, when I got my BMB, they had the lab upstairs do a quick analysis of the sample before they let me get off the operating table. I'm not sure what the lab verified in a span of a few minutes, but they did analyze the sample for "something".
I also really didn't mind the non-sedated BMB procedure at all, but I can see that a BMB would be an unnecessary use of significant medical care dollars just to indulge my own personal curiosity at this stage.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering myeloma - frequency of testing?
Thanks, Multibilly. That did help.
We are up just getting home from Mayo. I did not have another BMB. My doctor phoned early that morning and, much along your same reasoning, he convinced me to wait wait for blood work then decide if another BMB was needed because there was a change. I am happy to report I remain somewhat stable. I will continue to have blood monitored every 3 months. We will do other scans and tests when necessary, if I develop bone pain, or changes in numbers, etc.
I feel very comfortable and confidant with the doctor I am working with at Mayo as well as my local onc. Steep learning curve with all this, and sometimes that still makes me a little anxious right before an appointment.
We are up just getting home from Mayo. I did not have another BMB. My doctor phoned early that morning and, much along your same reasoning, he convinced me to wait wait for blood work then decide if another BMB was needed because there was a change. I am happy to report I remain somewhat stable. I will continue to have blood monitored every 3 months. We will do other scans and tests when necessary, if I develop bone pain, or changes in numbers, etc.
I feel very comfortable and confidant with the doctor I am working with at Mayo as well as my local onc. Steep learning curve with all this, and sometimes that still makes me a little anxious right before an appointment.
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Smittie - Age at diagnosis: 54
Re: Smoldering myeloma - frequency of testing?
Hi Smittie,
Glad to hear your appointment at Mayo went well and you are comfortable with the plan. Indeed, when patients are initially diagnosed with smoldering myeloma, in general it is suggested (by the International Myeloma Working Group) that patients have follow-up blood and urine studies in 2-3 months after initial evaluation, with a bone marrow biopsy, skeletal survey, and MRI of the spine and pelvis. If labs are stable after 2-3 months, then it is recommended to have testing every 4-6 months for the first year, and then every 6-12 months thereafter.
In truth, most of us would perform a baseline PET scan to make sure there is not any bony disease that would suggest a patient requires therapy. And I almost always continue to follow patients with smoldering myeloma every 3 months (lab work) throughout their course. Repeat imaging is only really warranted if light chain levels or M-protein levels are rising, or if there are new symptoms. As for the bone density study, most insurers will only pay for this every 2 years.
Sounds like you are on the right track.
Wish you the best!
Glad to hear your appointment at Mayo went well and you are comfortable with the plan. Indeed, when patients are initially diagnosed with smoldering myeloma, in general it is suggested (by the International Myeloma Working Group) that patients have follow-up blood and urine studies in 2-3 months after initial evaluation, with a bone marrow biopsy, skeletal survey, and MRI of the spine and pelvis. If labs are stable after 2-3 months, then it is recommended to have testing every 4-6 months for the first year, and then every 6-12 months thereafter.
In truth, most of us would perform a baseline PET scan to make sure there is not any bony disease that would suggest a patient requires therapy. And I almost always continue to follow patients with smoldering myeloma every 3 months (lab work) throughout their course. Repeat imaging is only really warranted if light chain levels or M-protein levels are rising, or if there are new symptoms. As for the bone density study, most insurers will only pay for this every 2 years.
Sounds like you are on the right track.
Wish you the best!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Smoldering myeloma - frequency of testing?
Also, on the issue of bone marrow biopsies ...
In smoldering myeloma patients, a baseline bone marrow biopsy is needed to confirm disease and this should also be sent for cytogenetics (karyotype and FISH) and sometimes gene expression profiling, although the latter is not routine at all places. Thereafter, a bone marrow can be repeated if there is evidence of progression.
There is no real indication to repeat it at routine intervals in the absence of serologic (blood test) progression … unless you are diagnosed with “non-secretory” disease (that is, disease present in the bone marrow without an M-protein or free light chain detected in the serum or urine).
Hope this helps. As always, let us know if you have any further questions.
In smoldering myeloma patients, a baseline bone marrow biopsy is needed to confirm disease and this should also be sent for cytogenetics (karyotype and FISH) and sometimes gene expression profiling, although the latter is not routine at all places. Thereafter, a bone marrow can be repeated if there is evidence of progression.
There is no real indication to repeat it at routine intervals in the absence of serologic (blood test) progression … unless you are diagnosed with “non-secretory” disease (that is, disease present in the bone marrow without an M-protein or free light chain detected in the serum or urine).
Hope this helps. As always, let us know if you have any further questions.
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Smoldering myeloma - frequency of testing?
Thank you, Dr. Landau, for taking the time to reply. The information is very helpful, I feel even more confidant moving forward with the screening schedule I discussed with my doctor; it helps reduce anxiety 
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Smittie - Age at diagnosis: 54
Re: Smoldering myeloma - frequency of testing?
Thank you for all this information. I am struggling with this very question of how often to do all this testing. Radiation is a concern as well as overdone testing. Your post has been helpful and informative.
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Jolene
9 posts
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