Hi Dennis. I'm so sorry you are dealing with constant pain. I've been on Darzalex and Pomalyst for a long time as well. I asked to have a PET scan since I haven't had one in several years. It might be a good idea to ask about imaging to evaluate your pain, if you haven't had it already 😉

I've seen my primary physician for my back pain. Because my T8 was eroded by an MM tumor my back is slightly collapsed (lost 2-inches of height), which affects surrounding nerves. My primary gave me a prescription for Gabapentin. It treats nerve pain. I am on a very low dose and it helps most of the time. My primary says the dose can be increased as needed. If I get overconfident and lift something too heavy or I do a lot of bending over I add a lidocaine patch. I really try not to get overconfident as I'm not ready to ask for an increase in the Gabapentin dose yet. 😁

It's good to have an MRI or PET scan periodically to observe changes to the spine. From what I've learned on this site, the back is usually (but not always) the most affected area of the body. Currently my oncologist has been ordering a PET scan each year to confirm the bone lesions are completely dormant and no new ones have formed. The side benefit is I can get a report on how my spine looks.

I'd encourage you to consult with your oncologist or even your primary physician about your back pain. There are things they can recommend to help and I've found both of mine are willing to cooperate with each other to be sure I get the best treatment.

Wishing you much luck finding a solution that fits your specific needs!!

If you’re IgG, even with Treatments you can exhibit a MSpike for 6 months to a year After Achieving true MRD Negative as per the Testing of a new BMB or Blood Sample via clonoSEQ.

It’s quite often that after Treatments they observe the small remaining MSpike for a IgG person (1.5 or less which can be completely False as a Lagging Indicator) and then decide a Person has only had a VGPR Response.

It requires a clonoSEQ test to 10 -6 (none per million cells) to confirm a person’s true Response).

Unfortunately the SCT does affect the microbiome of your Bone Marrow, making it more likely to have a Relapse. The Daba-Farber Determination Trial found the only benefit to a SCT was to Delay the Time before a First Relapse.

Then in Dec 2023 Dana-Farber made a Press Release saying to Keep the SCT In Reserve for If All Else Fails. The SCT and Determination Trial was many Years before newer Treatments like DarzFasPro and back then they could only test to 10 -5 (100,000 cells).

That said I do know of two people that had Tandem SCTs (pre-DarzFasPro) where they had excellent results and their Cases were quite severe - but based on Older Available Treatments.

It’s interesting Larry, I am I Toronto, Ontario at PMH with Dr. Keith Stewart, who came from the Mayo clinic, he is also director and VP of Princess Margaret Cancer Centre. I happen to have several high risk features in myeloma cytogenetics. 1q gain, one copy of del 17, IGH:MAF rearrangement (which is I think, 14:16) and had some extra medullary cells:EMD. So had some light radiation originally, then aggressive D-RVD and transplant. Dr. Stewart, because of my very high risk had suggested tandem transplant based on how the 1s one goes. Thankfully I didn’t collect enough for two transplants . I trust him as he is world renowned and a great man. My transplant went well. I am now 104 days post transplant and have lots of energy and feel good. I will be going on Len, Dara and velcade for maintenance because of the very high risk. I did reach VGPR just after 3 cycles of the induction. I am totally concerned with all the meds and what they can do down the road etc but praying for MRD negative. He did explain that if I am MRD positive not to worry as the maintenance can take me to negative. So that is my story and I am trusting but also concerned about all the meds but don’t want my illness to progress.

@A MyMyelomaTeam Member

I assure you Many More of Us can Live with MM in Complete Remission without Meds.

I’ve helped some friends with looking at their Labs and clonoSEQ where they have their Oncs doing Monitoring Only.

There’s also been some others on this Forum who have done the same, with Great Success.

I’m positive that they’re Treating MM wrong. We must have the Meds to get us to MRD Negative and avoiding the SCT is very important, Unless All Else Fails (as Per the Dana-Farber Dec. 2023 Press Release), Living Long Term on MM Meds does have the potential for Serious Consequences.

As per Dr Costa, who did the Masters Trial - he stated to Stop MM Meds after achieving MRD Negative, both to avoid the secondary effects of the Meds and to be able to Keep them In Reserve for if they’re ever needed Again.

It’s Big Pharma that wants us on MM Meds indefinitely, especially when Insurance pays for it. Pharma pays for the Clinical Trials that becomes the FDA Standard of Care that Docs/Oncs/Specialists are Obligated to Promote and only when the Patient says No Thanks, will Some Oncs work with the Patient “As per their Request”.

I accept that MM is Incurable and If I Ever Become MM Active again, I’ll gladly accept a Very Limited Treatment of probably a Month or Two, and then Return to Monitoring Only once I test as MRD Negative, but now 5 years into this and with my Life Style Habits, it’s extremely unlikely that I’ll ever be bothered by MM Again. My Onc with over 40 years in Hematology, feels the Same.

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