How frequently should you have a PET/CT scan if you undergo a biochemical relapse (M-spike only; normal free light chains and NO CRAB features and NO symptoms of any kind) and are NOT concerned with radiation.
Coach Hoke
Forums
Re: PET/CT scans during relapse with no symptoms
Hi Coach Hoke:
I don't know the exact answer to your question, but in my wife's case, we are trying to do every 6 months. We have not had an insurance problem so far. The other number I have heard was every year, but if you are experiencing a slowly rising M-spike, I would think that more frequently would be better, and maybe every year in the case of a stable M-spike.
Good luck to you.
I don't know the exact answer to your question, but in my wife's case, we are trying to do every 6 months. We have not had an insurance problem so far. The other number I have heard was every year, but if you are experiencing a slowly rising M-spike, I would think that more frequently would be better, and maybe every year in the case of a stable M-spike.
Good luck to you.
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JPC - Name: JPC
Re: PET/CT scans during relapse with no symptoms
Coachhoke,
I don't think there is a canned answer to your question, especially in the case of serological relapse. In fact, I think there is a lot of debate and a lack of consensus when it comes to the best way to monitor patients in this setting. See these articles:
C Lapa et al, "18FDG-PET/CT for prognostic stratification of patients with multiple myeloma relapse after stem cell transplantation," Oncotarget, Sep 2014 (full text of article)
D Zamarin et al, "Patterns of relapse and progression in multiple myeloma patients after auto-SCT: implications for patients’ monitoring after transplantation," Bone Marrow Transplantation, 2013 (full text of article)
I also know that I would likely get two different answers from my local onc and my specialist on this subject. My specialist only recommends radiological imaging very sparingly based on whether there are significant changes in one's profile or if one is experiencing pain. On the other hand, my local onc is more into the habit of suggesting routine, scheduled imaging. Frequency of imaging will also depend on your specific clinical circumstances (cytogenetics, changes in your M-spike, etc), as indicated in the second article.
I don't think there is a canned answer to your question, especially in the case of serological relapse. In fact, I think there is a lot of debate and a lack of consensus when it comes to the best way to monitor patients in this setting. See these articles:
C Lapa et al, "18FDG-PET/CT for prognostic stratification of patients with multiple myeloma relapse after stem cell transplantation," Oncotarget, Sep 2014 (full text of article)
D Zamarin et al, "Patterns of relapse and progression in multiple myeloma patients after auto-SCT: implications for patients’ monitoring after transplantation," Bone Marrow Transplantation, 2013 (full text of article)
I also know that I would likely get two different answers from my local onc and my specialist on this subject. My specialist only recommends radiological imaging very sparingly based on whether there are significant changes in one's profile or if one is experiencing pain. On the other hand, my local onc is more into the habit of suggesting routine, scheduled imaging. Frequency of imaging will also depend on your specific clinical circumstances (cytogenetics, changes in your M-spike, etc), as indicated in the second article.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: PET/CT scans during relapse with no symptoms
Thanks, JPC and Multibilly.
Multibilly: Those articles don 't apply to me as I never had a stem cell transplant. My insurance will cover the PET/CT scan every three months, "if indicated", and my doc will go along with my decision. As usual, it's not easy for me to make another decision.
Multibilly: Those articles don 't apply to me as I never had a stem cell transplant. My insurance will cover the PET/CT scan every three months, "if indicated", and my doc will go along with my decision. As usual, it's not easy for me to make another decision.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: PET/CT scans during relapse with no symptoms
I agree that this the articles are post-transplant focused, but I would think that the same principles and issues would apply if one's treatment had been drug-only versus ASCT and one was entering serological relapse.
Are you really not concerned about getting PET/CD'd every 3 months from a radiation exposure perspective? I fret over the prospect of getting a PET/CT every year or two. In any case, I think this is a situation where one really has to rely on the judgement and recommendation of an experienced specialist.
Are you really not concerned about getting PET/CD'd every 3 months from a radiation exposure perspective? I fret over the prospect of getting a PET/CT every year or two. In any case, I think this is a situation where one really has to rely on the judgement and recommendation of an experienced specialist.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: PET/CT scans during relapse with no symptoms
Hi Coachhoke,
I think Multibilly is right when he says that things aren't settled in terms of what approach is best in your sort of situation.
I'm curious, though, as to what your myeloma specialist is recommending.
Also, at what M-spike is your specialist recommending that you re-start treatment?
I think Multibilly is right when he says that things aren't settled in terms of what approach is best in your sort of situation.
I'm curious, though, as to what your myeloma specialist is recommending.
Also, at what M-spike is your specialist recommending that you re-start treatment?
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Jonah
Re: PET/CT scans during relapse with no symptoms
Multibilly;
I'm aware of the great amount of radiation that you are exposed to from a PET/CT scan and I I think that should be an issue to younger people (I'm 75). However, I don't know any other way to monitor my relapse (and I do want to start treatment before the multiple myeloma does me much harm).
Jonah:
My oncologist suggests, in my situation (biochemical relapse, NO CRAB features) that I have a PET/CT scan every six months.
As for my M-spike, my last reading was 0.9 g/dl, which is exactly where it was when I was first diagnosed 4 years ago (after hovering around 0.3 for the last 3 and a half years while on Velcade and dex for six months, two years on Revlimid, and 14 months of drug holiday). He wants me to start back on Revlimid.
My last PET/CT was October 2015 and showed no activity.
I'm aware of the great amount of radiation that you are exposed to from a PET/CT scan and I I think that should be an issue to younger people (I'm 75). However, I don't know any other way to monitor my relapse (and I do want to start treatment before the multiple myeloma does me much harm).
Jonah:
My oncologist suggests, in my situation (biochemical relapse, NO CRAB features) that I have a PET/CT scan every six months.
As for my M-spike, my last reading was 0.9 g/dl, which is exactly where it was when I was first diagnosed 4 years ago (after hovering around 0.3 for the last 3 and a half years while on Velcade and dex for six months, two years on Revlimid, and 14 months of drug holiday). He wants me to start back on Revlimid.
My last PET/CT was October 2015 and showed no activity.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: PET/CT scans during relapse with no symptoms
Thanks for the additional information, Coach.
Is your M-spike definitely increasing, or is it just bouncing around and it happen to hit 0.9 recently It's unusual that your free light chain levels aren't changing even though your M-spike is. I think that's quite rare (although it can happen).
If your free light chain levels are normal and your M-spike isn't starting to climb rapidly, I wonder if it's really necessary to start treatment again. An M-spike of 0.9 g/dL isn't really high at all, and you could remain stable at that level for quite a while. There are myeloma patients who stay in an "MGUS-like" state, with M-spikes like yours, for a very long time without any treatment.
Obviously, your specialist has his reasons for recommending that you start treatment again, and I'd certainly give that advice a lot of long and hard thought. I just worry that, more and more, myeloma patients are being treated with Revlimid or other drugs when they might have stable, MGUS-like disease for a while without treatment. Plus, if they would opt for no treatment, they would spare themselves the side effects and possible bone marrow suppression that can occur with extended treatment.
Is your M-spike definitely increasing, or is it just bouncing around and it happen to hit 0.9 recently It's unusual that your free light chain levels aren't changing even though your M-spike is. I think that's quite rare (although it can happen).
If your free light chain levels are normal and your M-spike isn't starting to climb rapidly, I wonder if it's really necessary to start treatment again. An M-spike of 0.9 g/dL isn't really high at all, and you could remain stable at that level for quite a while. There are myeloma patients who stay in an "MGUS-like" state, with M-spikes like yours, for a very long time without any treatment.
Obviously, your specialist has his reasons for recommending that you start treatment again, and I'd certainly give that advice a lot of long and hard thought. I just worry that, more and more, myeloma patients are being treated with Revlimid or other drugs when they might have stable, MGUS-like disease for a while without treatment. Plus, if they would opt for no treatment, they would spare themselves the side effects and possible bone marrow suppression that can occur with extended treatment.
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Jonah
Re: PET/CT scans during relapse with no symptoms
Jonah,
Your thoughts are exactly like mine; and I wrestle with those decisions. My M-spike isn't bouncing around; it has been slowly trending upward from a low of 0.2 last August, to 0.9 three weeks ago. Free light chains and ALL other blood work has been in normal range since two months after my initial diagnosis.
Thanks for your interest and I sincerely appreciate your input.
Your thoughts are exactly like mine; and I wrestle with those decisions. My M-spike isn't bouncing around; it has been slowly trending upward from a low of 0.2 last August, to 0.9 three weeks ago. Free light chains and ALL other blood work has been in normal range since two months after my initial diagnosis.
Thanks for your interest and I sincerely appreciate your input.
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: PET/CT scans during relapse with no symptoms
Hi Coach,
I think it's good that you're not rushing to re-start treatment. You don't have any elevated free light chain levels, and your M-spike is not at all high. Just to put things in perspective, Multibilly, who has been smoldering for several years now, has an M-spike that is twice as high as yours, and also has somewhat elevated free light chain levels. But he is not rushing to be treated. (Here is a link to a forum posting with a history of his main lab results.)
I think it's good that you're not rushing to re-start treatment. You don't have any elevated free light chain levels, and your M-spike is not at all high. Just to put things in perspective, Multibilly, who has been smoldering for several years now, has an M-spike that is twice as high as yours, and also has somewhat elevated free light chain levels. But he is not rushing to be treated. (Here is a link to a forum posting with a history of his main lab results.)
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Jonah
12 posts
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