These things are so intimidating for me. The thought of me asking my Dr to do certain tests is terrifying.

My whole journey started in August of 2020 (during the pandemic) when I had rt 'kidney' pain and was sent for an ultrasound and then an MRI of my kidney. There were no abnormalities found with the kidney but a shadow on my spine sent me for an MRI of my thoracic spine where a large mass was identified exuding from the vertabrae. I was hospitalized immediately at Cooper in Camden NJ and the pathology from a subsequent bone biopsy of the area revealed a plasmacytoma. I met with Rad Onc who scheduled me for 24 radiation tx. All labs were ok at that point, when I saw the hematologist, he labeled me MGUS. All labs remained normal for about 6 months but by April of 2021, everything changed and I was diagnosed with Stage II Kappa Light Chain multiple myeloma and began initial treatment with RVD (pretty standard) which brought all the numbers down. In 2022, I had an MRI of my T and L-spines which showed compression fx of T-8 and T-10, caused by the RT on my T-9. To this day, I develop discomfort at this area if I am working too long like chopping vegetables or wrapping presents, but if I rest for about 10 mins with my back pressed against a pillow, the discomfort resolves and I can go back to what I was doing. There's much more to my journey, go to my page to read more but that is where it all started - a huge plasmacytoma on my T-9 vertabrae

@A MyMyelomaTeam Member
That is amazing!
I may have a single plasmacytoma upper rib cage
Not painful, mobile & size of a walnut.
Thank you so much
I'll read your story again

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A MyMyelo...

Part 2:

Fortunately, none of that was ever needed. I've never had so many Docs/Oncs/Specialists say to me - "Great News but I don't Understand" - was what they all said when they saw the results of my recovery after treatment with Revlimid & Dex.

My Diet & Supplements were definitely helping but on their own, had No Chance of Stopping the Bone Tumor.

Looking back - I made some mistakes and I was very Lucky. I now understand that if my quarterly blood sample clonoSEQ MRD test ever becomes Positive, I need to immediately get a new PET/CT to see if the Activity is from my Marrow or a Bone Lesion, such as a Single Plasmacytoma, since they behave very differently.

In most cases, Marrow MM is a slow burn. Many people have MGUS, then SMM, and finally full MM where this process takes place over many years.

In comparison, a solid bone tumor (single plasmacytoma) can become an Acid-like Cancer, spreading very quickly to surrounding bones.

As I've Documented at my Story @A MyMyelomaTeam Member, I believe the Minerals & Vitamins plus the Pre & Probiotics conditioned my body to be extremely receptive to the MM Treatments of Revlimid & Dex. My weekly Labs during that Treatment Documented my instant response and recovery. The Tumor Cancer was killed-off in a week and I tested MRD Negative again in 6 weeks.

Along the way, in my Research, I found that when our Marrow is producing healthy, cancer free blood, we can replace our peripheral blood in 30 to 120 days. The only way for me to have returned to MRD Negative in 6 weeks (42 days) was due to my Bone Lesion Tumor Cancer being gone in a week, or possibly less and that my Marrow was never Active MM during this entire Event.

I've had a lot of Luck through All of This. Two days before I started Treatment for my Bone Lesion on Sept 1, 2023, I got a new BMB (Aug 30, 2023). When I requested this, I was told - No Need, it won't change my Treatment Plan. I explained to the new Onc (my Onc was on vacation), that I needed a BMB to know if my MM had mutated. If it had and I had more than 5% bad plasma, I needed to have the clonoSEQ people retrieve a BMB Slide so they could setup a new Baseline of my Cancer's DNA, so that I could get future blood sample clonoSEQ Monitoring, once I had returned to MRD Negative, after whatever Treatment it took.

Well that BMB was a Gold Mine of Info. The BMB, just prior to Treatment, said my Marrow had No Abnormalities, less than 0.1% bad plasma, too little to do a FISH test, no sign of my original t4;14 (I knew this was possible once I had become MRD Negative in 2022), and it showed, at the peak of my Bone Tumor, I had 11% Natural Killer Cells (our innate immune defense against serious infections - I had been off All MM Meds for 15 months at that point). This past May, I had my Natural Killer Cells tested - I'm now at 17% (range is 4 -25%). This is a very healthy defense system, especially being that I'm 71.

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A MyMyelo...

My Bone Lesion Tumor at the top of my Left Arm Bone, that I treated in Sept of 2023, was a Single Plasmacytomas. As the AI response starts out saying they're rare, around 5%. Mine was even rarer since I had full blown Marrow MM in 2021, had Treatment (no Stem cell collection and no ASCT) and My Marrow was in complete remission shortly thereafter (stopped all MM Meds by June 2022).

The extra rare part was that my Marrow stayed uninvolved during my Bone Lesion Tumor. My local Onc said any time a person's had Marrow MM, any Active Lesions will cause the Marrow to become involved again. My Consulting John Hopkins Onc said they've seen rare cases like mine where there's only a new Single Plasmacytomas without any new Marrow Activity.

At my Story @A MyMyelomaTeam Member, I've thoroughly Documented this entire event with Imaging (before, during, and after), detailed Labs and a detail account of everything I went through.

The AI said treatment typically includes Radiation. I did not get Radiation. Very Wisely my Interventional Radiologist told me Radiation should be my Last Resort, saying Radiation turns Bone to Stone and that my MM Meds of Revlimid and Dex are Systemic and will kill off the Cancer throughout my Body. Had I received Radiation, my Bone Lesion would have never been able to have that Hole repaired - as Stone, it would have remained a Hole.

My local Onc retold my Story to a young visiting Onc, as this Bone Repair and the quick rising and return to normal, of my Alk Phos, is like what happens to a child when they break a Bone. The body has the required minerals and vitamins and resiliency to quickly repair the bone, every bit as good as new.

To their amazement, my Full Weekly Labs documented my Recovery was instant. The Bone Lesion Tumor Cancer was killed-off in a week. My Bone Repaired itself in under 3 weeks (PET/CT in 12 days already showed the Repaired Bone and the Full Body Skeletal Survey at 19 days confirmed it).

I've Documented how this was possible through my Supplements and Treatment MM Meds, without Radiation or Surgery. I took certain Pre and Probiotics that quickly created Butyrate in my colon to Reset IL-17 to allow normal Osteoblasts and enough Minerals and Vitamins to provide the Construction materials necessary for Bone Building. My Alk Phos (bone activity indicator) rose quickly during that time and returned to Normal afterwards. This was all supported by my Plant Based Diet and the Revlimid and Dex to do the killing of the Tumor.

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A MyMyelo...