Hello everyone,
My name is Allie and I'm here on behalf of my partner Brendan. We got the results from his PET scan and it revealed lytic lesions, or non avid lucencies, in the sternum, vertebrae and ribs.
My question is: Do we now have to start treatment?
A bit of background information:
Solitary bone plasmacytoma found in sacrum in 2014. Diagnosed IgG kappa myeloma. Subsequent radiation. M-spike has increased since then from 24.3 g/l (2.43 g/dL) to 38.8 g/l (3.88 g/dL) at present. FLC ratio is 40. Kidneys functioning fine. Borderline anemic.
One doctor suggested to start immunotherapy with Darzalex (daratumumab).
Very disappointed today after this news. Hoped to smoulder for a long time. They have recommended bisphosphonates as well, which I have concerns about.
Any advice or information anybody may have would be greatly appreciated .
Thank you,
Allie
Forums
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AllieIRE - Name: Allie
- Who do you know with myeloma?: My partner Brendan
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 45
Re: Smoldering with lytic lesions - time for treatment?
Hi Allie,
Sorry to hear about how things have been going with Brendan.
Unfortunately, if the lesions that were seen on the PET scan are truly lytic lesions that are due to his myeloma, most doctors would say that Brendan's multiple myeloma has progressed, and that treatment is warranted.
Bone lesions are one of the "CRAB" criteria for a (symptomatic / active) multiple myeloma diagnosis; they're the "B" in the acronym. They also are considered a "myeloma defining event" (MDE) in the updated criteria for a multiple myeloma diagnosis. See this post here in the forum for more on the criteria for a multiple myeloma diagnosis:
"Criteria for a multiple myeloma diagnosis"
Has Brendan had a bone marrow biopsy recently? If so, what was his plasma cell percentage? Likewise, did they test his myeloma cells to for chromosomal abnormalities.
Good luck!
Sorry to hear about how things have been going with Brendan.
Unfortunately, if the lesions that were seen on the PET scan are truly lytic lesions that are due to his myeloma, most doctors would say that Brendan's multiple myeloma has progressed, and that treatment is warranted.
Bone lesions are one of the "CRAB" criteria for a (symptomatic / active) multiple myeloma diagnosis; they're the "B" in the acronym. They also are considered a "myeloma defining event" (MDE) in the updated criteria for a multiple myeloma diagnosis. See this post here in the forum for more on the criteria for a multiple myeloma diagnosis:
"Criteria for a multiple myeloma diagnosis"
Has Brendan had a bone marrow biopsy recently? If so, what was his plasma cell percentage? Likewise, did they test his myeloma cells to for chromosomal abnormalities.
Good luck!
Re: Smoldering with lytic lesions - time for treatment?
Thank you Terry for responding,
He had a bone marrow biopsy done before Christmas and it came back at 20 percent. My query now is from the PET CT scan. These non-avid lucencies have no FDG uptake, which I hoped meant they are not cancer "active" sites. I hoped that bisphosphonates may be treatment enough for the moment.
I live in Ireland and was told by the consultant here that the genetic testing here is of poor quality and can't be relied upon.
His calcium and creatinine levels are normal. He has had no serious infections.
So good to get someone else's opinion. Thank you.
He had a bone marrow biopsy done before Christmas and it came back at 20 percent. My query now is from the PET CT scan. These non-avid lucencies have no FDG uptake, which I hoped meant they are not cancer "active" sites. I hoped that bisphosphonates may be treatment enough for the moment.
I live in Ireland and was told by the consultant here that the genetic testing here is of poor quality and can't be relied upon.
His calcium and creatinine levels are normal. He has had no serious infections.
So good to get someone else's opinion. Thank you.
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AllieIRE - Name: Allie
- Who do you know with myeloma?: My partner Brendan
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 45
Re: Smoldering with lytic lesions - time for treatment?
Hi Allie,
I'm not a doc, but I think if the lesions are non-FDG-avid that would indeed imply that the lesions are benign. Also, if he was diagnosed earlier with a solitary plasmacytoma, I'm guessing that he must have a PET/CT done at that time. Were the same artifacts found on the earlier PET/CT scan?
Also, did the doctor say which of the latest clinical findings prompted him to suggest starting treatment at this time?
I'm not a doc, but I think if the lesions are non-FDG-avid that would indeed imply that the lesions are benign. Also, if he was diagnosed earlier with a solitary plasmacytoma, I'm guessing that he must have a PET/CT done at that time. Were the same artifacts found on the earlier PET/CT scan?
Also, did the doctor say which of the latest clinical findings prompted him to suggest starting treatment at this time?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering with lytic lesions - time for treatment?
Hi Multibilly, and thank you so much for replying ,
They are going to send me out his previous PET results from 3 years ago, so it will be interesting to see if he had any lucencies then.
They say he has a high risk of progressing, so they seem eager to treat him.
February of last year his M-spike was 25.6 g/l (2.56 g/dL) and has gradually increased to 38.8 g/l (3.88 g/dL) at present.
Kappa/lambda ratio 40.
He has immunoparesis:
IgA - 0.48
IgM - 0.17
IgG - 38.3
I would love to be able to plot all this on graphs, but I'm just not mathematically minded.
From what I've researched, he doesn't quite fit into that category and could happily still smoulder. He has old healed fractures on two ribs, so I'm wondering does he have some degree of osteopenia or osteoporosis and requesting a DEXA scan might be a good idea. He's 48 and we have 4 small kids, so I have to make sure we take the right course of action.
They are going to send me out his previous PET results from 3 years ago, so it will be interesting to see if he had any lucencies then.
They say he has a high risk of progressing, so they seem eager to treat him.
February of last year his M-spike was 25.6 g/l (2.56 g/dL) and has gradually increased to 38.8 g/l (3.88 g/dL) at present.
Kappa/lambda ratio 40.
He has immunoparesis:
IgA - 0.48
IgM - 0.17
IgG - 38.3
I would love to be able to plot all this on graphs, but I'm just not mathematically minded.
From what I've researched, he doesn't quite fit into that category and could happily still smoulder. He has old healed fractures on two ribs, so I'm wondering does he have some degree of osteopenia or osteoporosis and requesting a DEXA scan might be a good idea. He's 48 and we have 4 small kids, so I have to make sure we take the right course of action.
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AllieIRE - Name: Allie
- Who do you know with myeloma?: My partner Brendan
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 45
Re: Smoldering with lytic lesions - time for treatment?
Immunoparesis and M-spike velocity (the ongoing increase in an M-spike level over time) are both considered to be factors for higher risk of progression to multiple myeloma.
In any case, I think you are in one of those situations where there may be no clear cut criteria to suggest starting treatment (i.e. meeting one of the CRAB criteria). But a given specialist may suggest starting treatment based on your partner's overall diagnostic picture and their own treatment philosophy, I'm guessing that my specialist would likely not start treatment under these circumstances, but I can't say for sure. But my specialist also wouldn't likely start treatment based solely on meeting one of the new myeloma defining events (MDEs) outlined here, whereas other specialists very well may initiate treatment based on a patient developing an MDE:
Rajkumar, SV, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
Some patients and specialists are eager to start treatment to head off the disease if various markers suggest the likelihood of developing one of the CRAB criteria in the next year or two. Others are not convinced that early treatment under these circumstances makes sense. Having said that, getting a second opinion may be a good idea.
In any case, I think you are in one of those situations where there may be no clear cut criteria to suggest starting treatment (i.e. meeting one of the CRAB criteria). But a given specialist may suggest starting treatment based on your partner's overall diagnostic picture and their own treatment philosophy, I'm guessing that my specialist would likely not start treatment under these circumstances, but I can't say for sure. But my specialist also wouldn't likely start treatment based solely on meeting one of the new myeloma defining events (MDEs) outlined here, whereas other specialists very well may initiate treatment based on a patient developing an MDE:
Rajkumar, SV, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
Some patients and specialists are eager to start treatment to head off the disease if various markers suggest the likelihood of developing one of the CRAB criteria in the next year or two. Others are not convinced that early treatment under these circumstances makes sense. Having said that, getting a second opinion may be a good idea.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering with lytic lesions - time for treatment?
We'll definitely get the second opinion and maybe a third, although I feel I already know what they'll say. 
.
I'd like to get past winter and see does the spring /summer, Zometa, some supplementary changes improve his numbers and his bones, get re-scanned, and take if from there.
Thanks a mill.
. I'd like to get past winter and see does the spring /summer, Zometa, some supplementary changes improve his numbers and his bones, get re-scanned, and take if from there.
Thanks a mill.
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AllieIRE - Name: Allie
- Who do you know with myeloma?: My partner Brendan
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 45
Re: Smoldering with lytic lesions - time for treatment?
Thanks for following up with the discussion of the PET scan results, Multibilly. In my earlier post in this thread, I tried to make it clear that the lytic lesions would meet the criteria for a symptomatic multiple myeloma diagnosis if the lesions were judged to be due to multiple myeloma. I assumed this was the case from Allie's original post, but you're right that the "non-avid" wording in the PET report suggests the lesions may be due to something other than myeloma.
This probably isn't the case, but I wonder if myeloma that isn't very aggressive can cause lesions, but then die out on its own -- or as a distant effect of radiation therapy -- so that the lesions are non-avid on PET scans, but are still the result of multiple myeloma.
It would be interesting to know more about what the older PET scans show.
What's confusing to me is the suggestion to use Darzalex as treatment, if it's decided that Brendan should be treated. Darzalex is not approved anywhere for the treatment of newly diagnosed myeloma patients, so presumably the treatment would be part of a trial. The Darzalex trial for smoldering myeloma, however, is no longer recruiting. So it would have to be as part of a trial for newly diagnosed (symptomatic) multiple myeloma patients.
But, if the lesions are not multiple myeloma-related, then Brendan doesn't seem to meet the criteria for a symptomatic multiple myeloma diagnosis.
So I keep wondering if the doctors think the lesions are, in fact, myeloma-related.
In any case, good luck, Allie, and thanks for the additional comments, Multibilly.
This probably isn't the case, but I wonder if myeloma that isn't very aggressive can cause lesions, but then die out on its own -- or as a distant effect of radiation therapy -- so that the lesions are non-avid on PET scans, but are still the result of multiple myeloma.
It would be interesting to know more about what the older PET scans show.
What's confusing to me is the suggestion to use Darzalex as treatment, if it's decided that Brendan should be treated. Darzalex is not approved anywhere for the treatment of newly diagnosed myeloma patients, so presumably the treatment would be part of a trial. The Darzalex trial for smoldering myeloma, however, is no longer recruiting. So it would have to be as part of a trial for newly diagnosed (symptomatic) multiple myeloma patients.
But, if the lesions are not multiple myeloma-related, then Brendan doesn't seem to meet the criteria for a symptomatic multiple myeloma diagnosis.
So I keep wondering if the doctors think the lesions are, in fact, myeloma-related.
In any case, good luck, Allie, and thanks for the additional comments, Multibilly.
Re: Smoldering with lytic lesions - time for treatment?
Hey Terry,
I'm sort of scratching my head the same way you are.
There is a trial that is about to open up in Ireland for newly diagnosed multiple myeloma patients that will utilize CyBorD + Dara:
http://www.cancertrials.ie/images/uploads/file/Studies%20due%20to%20open%20Oct%202016.pdf
I'm sort of scratching my head the same way you are.
There is a trial that is about to open up in Ireland for newly diagnosed multiple myeloma patients that will utilize CyBorD + Dara:
http://www.cancertrials.ie/images/uploads/file/Studies%20due%20to%20open%20Oct%202016.pdf
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Smoldering with lytic lesions - time for treatment?
The clinical trial with Darzalex was suggested to us before Christmas but at that stage we didn't have the PET scan, and we also didn't feel we met the criteria for ultra high risk. The trials were for relapsing myeloma but he was willing to put Brendan on it. He did say the trials with Darzalex may be finished by the time Brendan needed treatment.
These talks were with a specialist consultant in a different hospital, not our own consultant so we didn't know those particular trials weren't still available to us.
I should get the PET scan results on Monday, I'll let you know what they say.
Thanks again.
These talks were with a specialist consultant in a different hospital, not our own consultant so we didn't know those particular trials weren't still available to us.
I should get the PET scan results on Monday, I'll let you know what they say.
Thanks again.
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AllieIRE - Name: Allie
- Who do you know with myeloma?: My partner Brendan
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 45
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