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Robyn
Multiple Myeloma Discussion • May 28, 2025
My Journey From Patient to Coach
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Hi! I'm a fairly new Coach and loving the opportunity to provide support to others going through this Myeloma journey. My journey started in 2020 when I was diagnosed with MGUS, but it kicked into high gear last May when I was diagnosed with Multiple Myeloma. And let's just say, it's been an "interesting" ride so far. What helped me tremendously was going to the HealthTree San Diego Myeloma Round Table in March. There, I had the opportunity to hear excellent speakers, including my doctor, meet other Myeloma patients, and I met a husband and wife coaching team who inspired me to become a coach myself. I now have a couple of months under my belt, and I'm looking forward to what's yet to come. #healthtree #myeloma #aml
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SLDpac
Multiple Myeloma Discussion • May 27, 2025
Managing Nightly Leg Cramps: What Helps Me
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Nocturnal leg crampsare something that I have been dealing with since diagnosed. They have been worse the past couple of years. They do appear to be linked to my low magnesium stores. I do take supplements. Make sure your provider checks your magnesium levels as you might need an infusion. I also use CBD and THC one-to-one as a solve which sometimes helps.
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auburnDeer
Multiple Myeloma Discussion • May 27, 2025
Concerns About Periodontal Scaling With MM?
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Today I had a visit with a new dentist since my insurance company changed companies. I used to go every 3 or 4 months to have my teeth cleaned and never seemed to have a problem..Today I was told I need to have a periodontal scaling with delivery of antimicrobial agents in the gum area. My cost will be @ $400. I am a little concerned about the procedure and they indicated that they would get clearance from my multiple myeloma doctor.. Has anyone had this procedure done?
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AlanP
Multiple Myeloma Discussion • May 27, 2025
Confusing Results: M-Spike but Negative BMB?
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I am MM patient since 2020. After 4 lines of therapy I had CAR-T in July 2023. A few months back I had labs every month, Jan, Feb and March. That was 3 sets of labs at Mayo and another set at Moffit. All 4 sets of labs reflected a M-Spike of .3. While not high, my MM doc did state that I was definitely slowly relapsing. Same was stated by the Moffit doc. On 7 April I had a BMB and additional set of labs both of which came back negative for active disease. No good explanation from my doc. Does anyone have an opine as to how that could happen?
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Gerii2002
Multiple Myeloma Discussion • May 26, 2025
Seeking Clarity on Conflicting Results
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I was told in 2018, I was sick for several years running fevers. Finally they did a bone biopsey an the conclusion was MM. LAST MONTH I WENT TO 3 oncologist And one GP, an all had different results. I am beside myself. I don't have many good days my legs an arms are scared. I was at 911, I had my first cancer, that was stage 4, of anel cancer just like Farrah farccett,the mistake was leaving me, saying it's a rectal tear it cost me 12 years of my life! That's why I keep looking for help.
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3sisterskaye
Multiple Myeloma Discussion • May 23, 2025
XVD Side Effects & CAR-T After Early Relapse?
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I relapsed from my sct within a year. My specialist is putting me on xpovio, valcade and dex to get me ready for car-t I was wondering if anyone had been on that regime and how bad were the side effects? The doctor said can make you very nauseous. They gave me meds to help with that. My other question was if anyone who relapsed so quickly after sct had a longer lasting response to car-t. Thank you.