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Smoldering Multiple Myeloma (SMM). Questions and Answers

Posted by DMD81 @dmdinapoli81, Dec 6, 2025

I wanted to start a discussion specifically on SMM. Asking specific questions about time of diagnosis, like age, m-spike level, protein in urine level and % of bone marrow involvement. If you had MGUS prior to diagnosis? Any bone or joint paint? What your Hem-onc has as your monitoring schedule? Etc.

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donna195 | @donna195 | 14 hours ago
In reply to @sallik74 "@donna195 Does your insurance pay for your meds ? Any side effects from the darzalex? I'm..." + (show)
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@donna195
Does your insurance pay for your meds ?
Any side effects from the darzalex?
I'm already getting anxious for my 3 month blood test.
Hope there are none or minimal side effects on your Dvrd. 8 weeks too sounds short term. Go beat that beast down !!!

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@sallik74
My insurance has covered all of my meds. The only reaction I have had from Darzalex has been a red swollen face rash mostly under my eyes and on my cheeks. I met with my myeloma specialist at the Penn State Hershey Cancer Institute on Friday. The plan is that after 4 x 28 day cycles (approx july 21), we will begin harvesting my stem cells. It has all happened very quickly after my last PET scan results on March 17. After recovery from transplant we will resume monthly treatments with Darzalex and Revlimid for 2-3 years and do another bmb. If good we will stop treatment and watch and wait. By then, I will be 64 and praying that our brilliant research teams find a cure! Stay positive, stay loving, stay strong!

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crunchywfwf | @crunchywfwf | 14 hours ago

My MGCS number went from .9 to .68 when I started adding c8 MCT oil to my coffee and 2 TB 100% organic cacoa powder, 1 tb collagen and 1 tsp creatine. Cuts appetite and calories are under 1,000 a day and cutting carbs. We will see!

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sallik74 | @sallik74 | 6 hours ago
In reply to @hlwd7 "@sallik74 Diagnosed with high risk SMM in August 2025. Have just started Darzalex FasPro (had three..." + (show)
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@sallik74
Diagnosed with high risk SMM in August 2025. Have just started Darzalex FasPro (had three infusions so far). So far all well, no side effects or otherwise. Have you discussed this treatment with your oncologist?

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@hlwd7
my appointment is April 20th. I will mention this to my specialist.
Will let you know

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sallik74 | @sallik74 | 6 hours ago
In reply to @donna195 "@sallik74 My insurance has covered all of my meds. The only reaction I have had from..." + (show)
Profile picture for donna195 @donna195

@sallik74
My insurance has covered all of my meds. The only reaction I have had from Darzalex has been a red swollen face rash mostly under my eyes and on my cheeks. I met with my myeloma specialist at the Penn State Hershey Cancer Institute on Friday. The plan is that after 4 x 28 day cycles (approx july 21), we will begin harvesting my stem cells. It has all happened very quickly after my last PET scan results on March 17. After recovery from transplant we will resume monthly treatments with Darzalex and Revlimid for 2-3 years and do another bmb. If good we will stop treatment and watch and wait. By then, I will be 64 and praying that our brilliant research teams find a cure! Stay positive, stay loving, stay strong!

Jump to this post

@donna195 I always get nervous a week or so before my bloodwork. I've heard too many stories how this MM can rear its ugly head.
Good to hear your tolerating the darzalex/revilimid.
Please keep in touch !

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