My husband (a 59 year ophthalmologist), who has had multiple myeloma for 5 years, developed double vision in up-gaze. This started a little over 2 weeks ago. An MRI showed 10 round lesions in the orbits (space between back of eyeball and the skull) of both eyes. No bony involvement. He is currently on Darzalex, Revlimid, and dex. The last 6 months he has been feeling great, with falling M-spike and normal hemoglobins.
PET scan shows new activity in his right humerus, but otherwise fairly quiet. He had a surgical biopsy done last week of the lesions. They are multiple myeloma. This is an extremely rare location for plasmacytomas, and of the few reported, only 1% have been in both orbits. What are the chances of it happening to an ophthalmologist? Yesterday he discovered another lump that has just popped up on his side.
Next week he meets with his oncologist at Mayo to come up with the treatment plan. Considering he's been through the whole gamut of multiple myeloma treatments, I'm not sure what the new plan will be.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Extramedullary relapse: plasmocytomas of eye orbits
So sorry to hear about this development. The odds of this happening do sound astronomical.
I would imagine that radiation treatment might be considered as part of the treatment plan. And they might consider changing up the chemo? I would also imagine that your husband would know if surgery was an option ... but perhaps there are too many lesions to deal with the overall situation surgically?
I would imagine that radiation treatment might be considered as part of the treatment plan. And they might consider changing up the chemo? I would also imagine that your husband would know if surgery was an option ... but perhaps there are too many lesions to deal with the overall situation surgically?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Extramedullary relapse: plasmocytomas of eye orbits
Thanks, Multibilly. Surgery is not an option. Some of the lesions surround nerves and muscles. He thinks chemo will be the first approach, and radiation if that doesn't do the trick. But he is not a multiple myeloma expert. Thankfully, we have full trust in his doctor at Mayo.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Extramedullary relapse: plasmocytomas of eye orbits
It's got to be nerve wracking finding plasmacytomas in one's eyes. Wishing you well and curious what Mayo will suggest.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Extramedullary relapse: plasmocytomas of eye orbits
Good luck to your husband, Rumnting. I hope that the chemo treatments work well for him. I think that with being an ophthalmologist, he understood that the double vision could have been due to many reasons, including being connected to myeloma, and acted quickly on that.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Extramedullary relapse: plasmocytomas of eye orbits
What are the odds of that happening to an eye specialist?! But I have learned to see through the stats and understand multiple myeloma is a very individual disease. My own case had a few head-scratcher moments of "what are the odds, why me?"
I have read plasmacytomas are getting more common in extramedullary disease because we are all living with myeloma much longer now.
I have read plasmacytomas are getting more common in extramedullary disease because we are all living with myeloma much longer now.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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