They Say I Have Smoldering Multiple Myeloma,I Have It Since 2016, What Next?? The Pain Is So Bad Now, I Had Cancer A Few Years Back, | MyMyelomaTeam

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They Say I Have Smoldering Multiple Myeloma,I Have It Since 2016, What Next?? The Pain Is So Bad Now, I Had Cancer A Few Years Back,
A MyMyelomaTeam Member asked a question 💭

So confused, it took drs. 6 years to find anal cancer at a stage 4, how is this smoldering?

posted March 1
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A MyMyelomaTeam Member

Its not if your in Pain. I was smoldering myself and then I experienced back pain. I went to Oncologist at Moffitt Cancer Center and she determined I had Multiple Myeloma with 6 fractures in my back plus two lytic lesions in clavicle and femur bones. Get to a Specialist who knows Myeloma and what treatments are available for you at your current stage.

posted March 2
A MyMyelomaTeam Member

Get a mutiple myeloma specialist asap

posted March 2
A MyMyelomaTeam Member

As everyone has said, see a MYELOMA SPECIALIST, not just a hematologist/oncologist. The MMRF Patient Navigators (1-888-841-6673) can help you find the right one for you. It’s a free service and great people.
If you have not had a bone marrow biopsy, inquire about that. Also imaging, PET Scan in particular, will show if you have lytic lesions or myeloma related issues.

Be your own best advocate. Push to get the info you need.
Best wishes.

posted March 2 (edited)
A MyMyelomaTeam Member

Yes, get to a multiple myeloma specialist. Pain is possibly an indicator of progression. Time for a pet scan

posted March 2
A MyMyelomaTeam Member

I go to a university based NCI cancer center. I was diagnosed on the basis of my lab work-(M spike), MRI and X-rays. No PET indicated and no bone marrow aspiration. Since then I am followed by labs and MD visits every 3 months (at my request).

posted March 20

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