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Multiple Myeloma Diagnosis- Multiple Myeloma Stage 2 up from SMM? Help

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“From your imaging, blood calcium and kidney function (creatinine) all being normal it is difficult for me to get from SMM to a  stage 2 Multiple Myeloma diagnosis…”

Hi David. My name is Cathy.  I had a back injury in ’73. Back started getting real sore and I managed to get an MRI back in June. It showed multiple spinal lesions. This led to visit to oncologist–blood tests led to confirming the M-protein. I am writing to you because my original diagnosis was smoldering multiple myeloma. A visit to a multiple myeloma specialist yielded a stage 2 multiple myeloma diagnosis.
Other left field issues happened following (coincidentally) the PET scan and CT scans. I am in a town a couple of hours from the various specialists–feels like my body parts are divided up to five different towns. My recent concierge is no long that (billing issues) and I am a bit overwhelmed with the coordination of treatment. 
I did notice that the oncologist did not enter the blood markers taken at his office. So, I do not have the m-spike value that you asked for. I emailed a request to enter that into the portal. I’m told it exists in my blood and not in my urine. I hope it remains that way (not in my urine).
I am told I do have higher than normal protein levels in my urine (not sure what that means)–my urine is foamy/frothy. My two main concerns are:
  • MRI showed the multiple lesions on the back.
  • CT Scan (contrast) and PET  scan–a couple of back lesions were “lucent” on the petscan.
My recent blood tests show these numbers:
  • Creatinine—.74 (reference range: 0.50–0.99 mg/dL)
  • BUN-— There is no sol BUN–there is a BUN/Creatinine “not applicable”
  • Not sure if the eGFR African American at of 102
I hesitate to have Bone Marrow Biopsy due to bone density issues and two vertebrae fractures AND also do not want contrast MRI due to a temporary kidney shut down and ongoing challenged kidneys (still working–but spikes in protein and foamy urine)……etc. 
Bone density–approved (insurance) for Tymlos--need to rebuild—yet fear starting this–so I do algae cal. Cannot do Prolia due to upcoming major dental (from past horse accident). 
I’m in Ojai, CA and feeling a bit overwhelmed.  
Do you help coordinate treatment. What do you charge? 

Thanks–Cathy


Hi Cathy-

Without a complete set of blood, urine and imaging diagnostic testing I cannot make any definitive statements about your diagnosis of multiple myeloma but I will communicate what I learn from the info you have sent me.
1) “MRI showed the multiple lesions on the back.  CT Scan (contrast) and Petscan–a couple of back lesions were “lucent” on the petscan”
My read of your scans is that there was no “uptake” meaning, you may have lesions but they do not have active MM. I think you are okay here but please clarify this with your oncologist.
2) “Creatinine—.74 (reference range: 0.50–0.99 mg/dL)”
This test indicates that your kidney function is normal. 
3) “CALCIUM is 9.3  (8.6-10.4mg/dL)”
Your normal blood calcium combined with your PET results indicate that your bones are fine re MM. You may have damaged them earlier in life but there is currently no indication of MM based on your test results. 
4) Regarding coordinating your care. I know a lot about MM, diagnosis, therapies, etc. but I know little about the other specialties listed below. I would not be able to coordinate anything other than oncology related to MM.
This leads to another issue: many specialists in different locations which is why I could use help coordinating care. 
Oncologist (for now)—UCLA health at Porter Ranch
Endocrinologist—UCLA health at Ventura
Orthopedic—UCLA health at Encino
Intestines—UCLA health in West LA
Dental–uninsured (surgery needed before any bone density treatment which I hesitate to start)—Pasadena
Without looking at other markers such as your free light chains or monoclonal protein (m-spike), it is impossible for me to make any definitive statements regarding your MM diagnosis. From your imaging, blood calcium and kidney function all being normal it is difficult for me to get to a diagnosis of stage 2 MM.
But again, there is a lot of your info that I just don’t know.
To re-iterate, I cannot coordinate anything, any other medical info other than your MM related care. I just don’t have enough experience.
Let me know if you have any questions.
David Emerson
  • MM Survivor
  • MM Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Smoldering multiple myeloma

Smoldering multiple myeloma (SMM) is an early precursor to a rare blood cancer known as multiple myeloma, which affects plasma cells. This type of cancer produces certain proteins that can be measured in both blood and urine. These proteins show up before a person has any symptoms of cancer…

Understanding the stages of multiple myeloma

Multiple myeloma, like other cancers, can be defined by stages. There are three stages of the disease, each more advanced than the one before. A precursor to stage 1 is known as SMM.

A person can have SMM for several years before they progress to stage 1 multiple myeloma. Even when there are no outward symptoms, the malignant plasma cells secrete proteins into the body. These proteins can be measured in the blood or urine of people who otherwise exhibit no signs of disease.

There may be lesions on the spines of people with SMM. One studyTrusted Source showed that monitoring these tumors regularly with MRI scans can detect the progression of the disease…”

 

 

 

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