Multiple myeloma lytic lesions pelvic area. What treatments?

Posted by omemee @omemee, Jun 23 8:24am

Has anyone gone from mgus to multiple myeloma in pelvic area? Radiologist found problem in pelvic area, only on skeletal survey. Have to get an MRI following insurance approval. What treatments have you had? What has been successful? I’m relatively new to this only having had mgus for six years.

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Hello @omemee and welcome to Connect.

I'm sure it would be helpful for you to connect with others who have experienced this type of diagnosis. On Connect, we have two discussions on MGUS. Here are the links to those discussions,
https://connect.mayoclinic.org/discussion/mgus-diagnosis/ and
https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/
I would like to invite others to share with you such as @gingerw, @mjlandin, and @ea1.

You said that this problem was found in the pelvic area, only on the skeletal survey. Had you been having symptoms that led to this skeletal survey? How long ago were you initially diagnosed with MGUS?

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@hopeful33250

Hello @omemee and welcome to Connect.

I'm sure it would be helpful for you to connect with others who have experienced this type of diagnosis. On Connect, we have two discussions on MGUS. Here are the links to those discussions,
https://connect.mayoclinic.org/discussion/mgus-diagnosis/ and
https://connect.mayoclinic.org/discussion/mgus-and-quite-high-free-kappa-light-chain-and-kappa-lambda-ratio/
I would like to invite others to share with you such as @gingerw, @mjlandin, and @ea1.

You said that this problem was found in the pelvic area, only on the skeletal survey. Had you been having symptoms that led to this skeletal survey? How long ago were you initially diagnosed with MGUS?

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Thank you so much for your reply. I had elevated kappa light chains, and was diagnosed with mgus in 2016. My doctor ordered a skeletal survey this year at my checkup. He does that with patients who have had mgus for awhile, My bloodwork was ok, urine ok, but he didn’t like one of the pelvic x rays, and the radiologist said it looked like multiple myeloma. I have to wait two weeks for insurance to be ok’d before mri can be done. I have had hip pain, joint mobility issues, but I thought it was probably arthritis as I turned 75 in April. I do have some numbness but also after Covid, my blood sugar has been elevated. I am wondering what they do with pelvic lytic lesion issues. Am rather frightened to hear of the bad X-ray.

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Greetings Omemee. I was dx’d with MGUS over a year ago. I had a “lesion” on my spine at C2. They did a CT and decided it was arthritis.
They do bloodwork quarterly. Since it has been stable, we are doing the old “wait and see.” I feel good and at 70 and that’s a good thing.
My HEM/ONC doc keeps reassuring me that it is a very small percentage of MGUS pts that advance to multiple myeloma and there are effective treatments in the unhappy and rare event that it does.
I hope your outcome is good from your MRI. Let us know!

Patty
Arkansas

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@omemee

Thank you so much for your reply. I had elevated kappa light chains, and was diagnosed with mgus in 2016. My doctor ordered a skeletal survey this year at my checkup. He does that with patients who have had mgus for awhile, My bloodwork was ok, urine ok, but he didn’t like one of the pelvic x rays, and the radiologist said it looked like multiple myeloma. I have to wait two weeks for insurance to be ok’d before mri can be done. I have had hip pain, joint mobility issues, but I thought it was probably arthritis as I turned 75 in April. I do have some numbness but also after Covid, my blood sugar has been elevated. I am wondering what they do with pelvic lytic lesion issues. Am rather frightened to hear of the bad X-ray.

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@omemee Please wait until the MRI is done. Images can be misleading. For now, don't do the "Dr. Google" thing, and frighten yourself. I bet your doctor has said the same thing to you, right? Take each step as just that, a step. Remember to breathe. Find something that will engage you, distract you. Remember to laugh and smile today. The two weeks will flash by, and then we will be here for you again. Meantime, please feel free to ask any questions you may have.

My MGUS was diagnosed in 2017, and lucky me, I went into smoldering multiple myeloma then active myeloma in Nov 2019.
Ginger

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@gingerw

@omemee Please wait until the MRI is done. Images can be misleading. For now, don't do the "Dr. Google" thing, and frighten yourself. I bet your doctor has said the same thing to you, right? Take each step as just that, a step. Remember to breathe. Find something that will engage you, distract you. Remember to laugh and smile today. The two weeks will flash by, and then we will be here for you again. Meantime, please feel free to ask any questions you may have.

My MGUS was diagnosed in 2017, and lucky me, I went into smoldering multiple myeloma then active myeloma in Nov 2019.
Ginger

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So many thanks! I appreciate that!!

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