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A MyMyelomaTeam Member asked a question 💭

That’s what my oncologist said today in my first consult. My research indicates that’s not necessarily true. She wants to do a PET scan before getting further lab results and bone marrow biopsy. That seems pretty aggressive to me. I’m hesitant to get a PET scans immediately because I’m claustrophobic and benzos don’t completely help. Any thoughts?

May 4
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A MyMyelomaTeam Member

Hi. I would go for it. I had BMB in January which showed an increase and I am schedule for Pet scan in July. I too am claustrophobic. To get through my last pet scan I just repeated to my self over and over. Life is good and I am good. Some anti-anxiety medication may help you as well. Mind you if you have no bone pain especially back, ribs, etc you might want to delay it a bit. Best of luck.

May 5
A MyMyelomaTeam Member

Check out the Multiple Myeloma Research Foundation. They have a Patient Handbook which will help you know the difference between Smoldering and MM. You can download it or print it. HTTPS://www.themmrf.org
My PET scan was easier than the MRI. When my daughter needed a back diagnosis, she did not fit in the MRI machine, so she got approved for a larger unit. She did not get claustrophobic. You can ask for it. According to the tech’s, a huge percentage of patients get claustrophobic. Fortunately my PET Scan showed no lytic lesions, but it did light up in some areas. They said it was from inflammation.
Paula🌹

The MMRF | Multiple Myeloma Research Foundation
The MMRF | Multiple Myeloma Research Foundation
May 5
MyMyelomaTeam

That's a really important question, and it's great that you're doing your own research — being an informed patient matters. Your instinct is worth exploring further.

An M protein level alone doesn't automatically confirm active myeloma over smoldering myeloma (SMM). Doctors look at a combination of factors to distinguish Show Full Answer

That's a really important question, and it's great that you're doing your own research — being an informed patient matters. Your instinct is worth exploring further.

An M protein level alone doesn't automatically confirm active myeloma over smoldering myeloma (SMM). Doctors look at a combination of factors to distinguish between the two, including:

- How many plasma cells are in the bone marrow
- Whether there are bone lesions
- Signs of organ damage (kidney function, calcium levels, red blood cell counts)
- Whether M protein levels are rising over time

A single M spike number, even at 2.87, isn't the whole picture on its own. Regarding the PET scan, it is a legitimate diagnostic tool for myeloma — it can detect bone lesions and help determine how advanced things are. So the recommendation isn't unusual. However, your concerns about claustrophobia are completely valid and worth raising directly with your oncologist.

It's worth knowing that a PET scan is generally more open than an MRI, which may feel less confining. That said, everyone's experience differs.

A few things worth discussing with your care team:

- Whether an MRI or CT scan could provide similar information first
- Whether additional blood and urine tests (like SPEP, UPEP, or free light chain tests) could help clarify the picture before scanning
- Options beyond benzos for managing claustrophobia during the scan

Getting a second opinion from another myeloma specialist is also completely reasonable at this stage — especially since this was your first consult.

May 4

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