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Introductions

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Home Forums Multiple myeloma Introductions

This topic contains 22 replies, has 10 voices, and was last updated by Cancer_bro cancer_bro 1 day, 19 hours ago.

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  • #10040
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members –

    @kathyrini, @ruiz619er, and @83phoenix

    Kindly introduce yourself to other community members so that we can know each other better

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  • #10007
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members –

    @janetlawton, @bwm, @faith, @jenblitzer, @angels505, @buckeye59, @reneecohen, @wowmom1944, @sunnyday, @jasoncash, @sbrockus, @shirlita, @janiceswartz, @teamsupermarrow, @nurserose, and @sim82.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9837
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members – @ndeshi11, @angel2466, @kevkickscancer, and @osielgr83

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9720
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members – @elyerite25 and @nikki.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9701
    Nikki
    nikki
    Participant

    On my 2nd round of chemo with darzalex, dex and just gotten taken off velcade since my docs feel it is causing my side effect of multiple styes. 5 months of between 1-6 styes at any one time…gone to 2 specialty opthamologists and 1 dermatologist. So I have been plagued with pain, inflammation, magenta unsightly eyes, fatigue, and probably worst of all, forgetfulness and unable to concentrate. An awful rare side effect that no one seems to know what to do!
    Anyone here ‘blessed’ with this too? If so what did you do?

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    • #10014
      Ruiz619er
      ruiz619er
      Participant

      I had the same problem with styes with the valcade revlamid combo. Only solution was to stop taking the shots. Right before my stem cell transplant(still dont understand the point of that) I had to give myself 3 similar shots in the stomach for 10 days. As far as what to do about the pain and forgetfulness get yourself familiar with medical marijuana. It’s just part of the process. About 6 months after your transplant you’ll find your new normal and adapt. Keep your head up stay positive and believe in yourself! Fight.

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  • #9646
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members – @stargazer81.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9544
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new member – @cancerwifey

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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    • #9547
      CancerWifey
      cancerwifey
      Participant

      Hi everyone! My husband is 46 and he was diagnosed in September.

      In 2015, he had pneumonia and a blood panel showed low neutrophils. We had an Oncology consult at that time, but since he was otherwise very healthy, it wasn’t pursued. Later that year he had shingles twice. We didn’t know that these were all possible signs. This past July, he had severe neck pain, and he has a previous injury and arthritis that flares up, but it was so bad he was bed ridden for weeks. We waited to be seen by an ortho specialist who was on maternity leave and a month later an X-ray showed he had two collapsed vertebrae and some fracturing. The ortho specialist concluded it was a bone infection, but a CT guided biopsy couldn’t find the source. He wore a brace until he could be seen by a spinal surgeon at the end of August. MRI and X-rays showed the infection was progressing and attacking a third vertebrae. So we got fit in for surgery to remove C2, C3, and C3, replace them with bone grafts and hardware and to do an open biopsy.

      The surgery was pretty intense, but it went well. We spent a week in hospital recovery and doing labs and waiting for the pathology on the vertebrae. Streptococcus pneumoniae was the source of infection, but this isn’t normally found in the spine, and after a lot of labs and imaging, eventually they found Multiple Myeloma to be the diagnosis.

      We found it very early and his organs are all in perfect shape. He has a lesion on his hip bone, but otherwise there are no other signs of further damage. We’re doing the bone strengthener injections and will start RVD chemo on Friday. The plan is 4-6 cycles to knock it into remission, and then a stem cell transplant.

      We are going through a lot, but we’re really hopeful. He isn’t as social networky as me, so I don’t know if he’ll join this page, but I did invite him. Thanks for reading.

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  • #9486
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @chelleyrock and @tazmomma

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9422
    Lewstairs
    lewstairs
    Participant

    Hello everyone! I’m @lewstairs – really difficult to work out my full name 😉

    My Dad is currently suffering with Multiple Myeloma and has been being treated for the last 2 years. He’s been through stem cell transplant and Carfilzomib and after those two failing, he’s now on a Lenalidomide and Ixazomib concoction. Always happy to answer any questions anyone has on the above treatments, and I’m sure I’ll be asking a few of my own on the way.

    Lewis

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  • #9416
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @annemj, @fia, @ktfrans, @christibc, @sas-edwards, @lewstairs, @davestrong, and @laura271gsd.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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  • #9216
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new members

    @boneheadkenny and @linfopedia.

    Kindly introduce yourself to other community members so that we can know each other better 🙂

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    • #9438
      Boneheadkenny
      boneheadkenny
      Participant

      In January 2015, after nearly 30 years of endurance sports, I was diagnosed with Multiple Myeloma. Though my organs don’t seem to have been hit too hard, I had a lot of bone involvement. I have lesions throughout my upper body and back, a 3 mm hole in my left hip, and 2 compression fractures in my hip. All this amounted to a staging of stage 2 (out of 3 stages for MM), and a plan for a bone marrow transplant in August 2015. I was no longer permitted to run and I immediately started chemotherapy and a weekly infusion to help my bones recover.

      I started walking and then jogging in the months following my transplant. At the end of January 2016, I ran my first 10k road race after my transplant. By the end of 2016, I had run 16 races, including 3 1/2 marathons and an 18 mile point-to-point trail race with 5,000 of elevation gain.

      I decided that I wanted to give back and affect positive outcomes for other patients and their families that were undergoing the same disease. We learned a lot from our experience. Staying healthy and active through treatment leads not only to faster recovery and better opportunities for healthcare providers to treat patients most effectively, but also continuing to move gives patients a better quality of life. They feel better, they manage pain better, and their mental outlooks are healthier.

      Beginning on April 1, 2018, I started running West from the Outer Banks of North Carolina along the Mountains to Sea Trail. I ran 54 days and covered 1175 miles all the way to the opposite end of the state to Clingman’s Dome, on the border of North Carolina and Tennessee. My goal to raise awareness of multiple myeloma, but also to encourage other patients with what they can accomplish despite obstacles.

      Throwing Bones is a patient-focused registered 501(c)3 non-profit for patients and caregivers of patients with Multiple Myeloma. Its mission is to support and inspire patients to healthy and active lifestyles before, during and after treatment and to issue small grants to patients and caregivers for non-medical financial needs through its Patient Assistance Fund.

      I finished the run at the end of May, but Throwing Bones’ mission is still strong and we still have a goal of benefitting Myeloma Patients and their caregivers.

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  • #8746
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new community members – @siobhanmoxhay96, @mamalea, and @michellethebeautybabe.

    We kindly request all new members to post an intro so that we all can know more about you 🙂

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  • #7991
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our new member – @jasonpotsander with warm greetings.

    Kindly introduce yourselves to community members so that we can know each other in a more better way 🙂 ❤

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  • #7897
    Poeticsoldier
    poeticsoldier
    Participant

    Hi fellow warriors, caregivers, and survivors! My name is Cedrik Wallace and I go by @poeticsoldier on IG as I write mostly about my fight with Multiple Myeloma. I’m currently writing a book about my experience and will be out soon. I was diagnosed with MM in 2012 and currently maintaining remission and my treatment includes Revlimid, working as an educator, living life, and writing. My auntie was just diagnosed with MM over the summer as it was a shock to our family. I’ve been in her corner as she has just completed her second cycle. Please keep her, Anita, in your prayers. Thank you.

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  • #7807
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s welcome our Multiple Myeloma members –

    @victor, @myron, @megansrq, @jasonberk, @daledupree, @laurariley, @nlesluv4u2, @favio, and @poeticsoldier.

    Kindly introduce yourselves to community members so that we can know each other in a more better way 🙂 ❤

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    • #7826
      Teri
      teri
      Participant

      Hi Everyone!

      I’m your captain, Teri, and it’s so great to be here with you all. I’m 46 years old, and I was diagnosed with multiple myeloma in January 2017. At that time, I was stage 3 and in acute kidney failure. I was initially treated with velcade, cytoxin, and dexamethasone until we started preparing for my stem cell transplant which was on Nov. 27th of last year. Now, I’m on maintenance chemo every two weeks which consists of velcade and dexamethasone.

      I’m an educator by trade, but I wasn’t able to work after April of last year because of side effects. I happily returned to work in March of this year, and I’m working full time now. Prior to my diagnosis, I was avid runner and tennis player. I used to work out every morning before work. In fact, it was pain in my rib cage after working out that first sent me to the doctor in November of 2016. Eventually, we learned it was myeloma. It’s been about eight months since my transplant and I just rejoined the gym. I’m so excited about that. I’m also excited to share any details of my journey to help any of you. Welcome to the group!

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      • #7849
        Megansrq
        megansrq
        Participant

        Hi. I am happy to have found the group. Diagnosed in June 2017, IgA/Kappa – Plasma Cell 70%. ASCT October 2017. Maintenance of Revlimid and Zometa.
        Working hard on happiness and not doom and gloom. 🙂
        I keep the hard stuff to myself as my family really just wants to hear and see that I am doing better. It’s been rough keeping a good front 24/7 and am grateful to this group for support.

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      • #7842
        Laurariley
        laurariley
        Participant

        Nice to meet you captain @teri 🙂 Hello guys, I am Laura – multiple myeloma fighter. Currently on bortezomib, lenalidomide treatment for the disease. It is a great experience to be here and part of such a supportive community 🙂

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  • #7806
    Cancer_bro
    cancer_bro
    Keymaster

    Let’s meet our Multiple Myeloma Captain – @teri

    This is an introduction thread which is meant to introduce yourself to other community members. It doesn’t matter if you are a fighter or survivor, please feel free to let us know about you.

    A wonderful community is built on the pillars of amazing people like our captains who accepted our invite to volunteer and help as many fighters as possible. We are honored and glad that they are now a part of our community 🙂

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  • #7655
    Cancer_bro
    cancer_bro
    Keymaster
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