I recently posted as a new member in the introductions with hubby's background info but I still don't understand so many aspects. My head is just swimming as I try to follow both hubby's most critical issues and balance that with my mother, who is also very ill with brain mets and stroke from lung CA.
I have tried reading as many of the forums as I could to look for answers, I apologize if this has been posted before and I missed it.
What determines when and if a bone marrow biopsy is repeated? (Hubby's first and only one was more than 1 year ago)
How often should PET scans be done? What triggers the need to repeat a scan? (again more than a year ago)
Initially it was stated that the finding of 10-15% myeloma cells was an incidental finding, but it is now being referred to as smoldering myeloma. Hubby has no monoclonal protein (M-spike), just all of his immunoglobulins are very low (IgA, IgG, IgM, IgE). Why would the status of this change if no bone marrow biopsy was done more recently to detect a change in percentage of myeloma cells?
New light chain results are in today; they are up a bit from last week, even though he just started Revlimid 1 week ago. How soon after starting a new chemo should we see a response if the new chemo is working? Primarily for amyloid, but doctor says it should cover the myeloma cells as well.
Thank you to the many who have so much knowledge and willingly share with those of us who are seeking!
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DeeBee - Name: DeeBee
- Who do you know with myeloma?: Husband AL Amyloidosis 10% myeloma cells
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 64
Re: Questions upon questions!
Hi DeeBee,
This is not a qualified answer to your questions, just the explanations I got and the experience I went through.
I first had one failed bone marrow biopsy (BMB) and then they had to repeat it. The first one established that I did not have the more grave indicators and they did not need to repeat it in order to decide my treatment. But my doctor explained that they needed a new BMB of better quality to make sure that I could enter into some of the trials after my autologous stem cell transplant (ASCT).
2-3 months after my ASCT they repeated the BMB and found no trace of myeloma. In February, 1 year after my last BMB, they are asking me to repeat it, even though all blood and urine tests indicate that I am so far clean. They are searching for minimal residual disease etc.
I had CT, MRI and PET scans (with radioactive indication injections) after the diagnosis and before the treatment, some of them both with and without contrast infusions. I understand that since I have no M-component or other indications for myeloma they will probably not do any scans now.
So, I do not believe that there is a fixed answer. It probably depends on the individual patient.
I guess that active myeloma (blood counts etc) or pain in the bones could indicate new scans to be done.
But ... as usual:-) be critical, insist that you get explanations from your myeloma specialist.
Best regards,
Lev
This is not a qualified answer to your questions, just the explanations I got and the experience I went through.
I first had one failed bone marrow biopsy (BMB) and then they had to repeat it. The first one established that I did not have the more grave indicators and they did not need to repeat it in order to decide my treatment. But my doctor explained that they needed a new BMB of better quality to make sure that I could enter into some of the trials after my autologous stem cell transplant (ASCT).
2-3 months after my ASCT they repeated the BMB and found no trace of myeloma. In February, 1 year after my last BMB, they are asking me to repeat it, even though all blood and urine tests indicate that I am so far clean. They are searching for minimal residual disease etc.
I had CT, MRI and PET scans (with radioactive indication injections) after the diagnosis and before the treatment, some of them both with and without contrast infusions. I understand that since I have no M-component or other indications for myeloma they will probably not do any scans now.
So, I do not believe that there is a fixed answer. It probably depends on the individual patient.
I guess that active myeloma (blood counts etc) or pain in the bones could indicate new scans to be done.
But ... as usual:-) be critical, insist that you get explanations from your myeloma specialist.
Best regards,
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Questions upon questions!
Hello,
I think that, because your husband has no qualifying M-spike, his myeloma would have to be monitored using a bone marrow biopsy and and free light chains. So typically as a smolderer you have blood work every 3 to 6 months when you have a measurable M-spike, and this is used to track disease progression. If you are nonsecretory (don't have an M-spike), then free light chains could be used instead, but a bone marrow biopsy would be the only true indicator of progression. A bone marrow biopsy is typically approved by insurance every 2 years for smoldering patients, but if you are nonsecretory, it would likely be approved more frequently.
I have a friend who is nonsecretory and she gets a bone marrow biopsy every 6 months.
PET scans are not usually repeated for smoldering patients due to the radiation exposure. They are done during initial work up to make certain that a patient does not have any plasmacytomas or early bone lesions to secure the diagnosis of "smoldering". I suppose you could have a follow-up PET, but most doctors will follow the symptoms after initial work up and perform tests accordingly.
I hope this helps.
Best
J
I think that, because your husband has no qualifying M-spike, his myeloma would have to be monitored using a bone marrow biopsy and and free light chains. So typically as a smolderer you have blood work every 3 to 6 months when you have a measurable M-spike, and this is used to track disease progression. If you are nonsecretory (don't have an M-spike), then free light chains could be used instead, but a bone marrow biopsy would be the only true indicator of progression. A bone marrow biopsy is typically approved by insurance every 2 years for smoldering patients, but if you are nonsecretory, it would likely be approved more frequently.
I have a friend who is nonsecretory and she gets a bone marrow biopsy every 6 months.
PET scans are not usually repeated for smoldering patients due to the radiation exposure. They are done during initial work up to make certain that a patient does not have any plasmacytomas or early bone lesions to secure the diagnosis of "smoldering". I suppose you could have a follow-up PET, but most doctors will follow the symptoms after initial work up and perform tests accordingly.
I hope this helps.
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
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