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blueOyster
Multiple Myeloma Discussion • June 18, 2024
Sharing My Journey to Remission
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I'm here for be a Multiple Myeloma patient since October 2019, have four months of treatments, and have a SCT -Auto in October 2020, since that date I'm in remission. My name is Jose Delacruz, Baton Rouge, Louisiana . I'm almost 71 years old
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Jewels95
Multiple Myeloma Discussion • June 18, 2024
My Induction Update: Feeling So Good Now
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I was diagnosed February 2024. I am finishing my 4th month of induction and have been told my numbers look excellent. I have 2 more months if induction therapy but my shots now will be every other week. I will then harvest me stem cells and go on maintenance therapy. My body was in so much pain in February, but I am feeling so good now. I still have fatigue but I can deal with that and rest when I need to. My doctor said live your life and that’s just what I am starting to do
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jadeFish
Multiple Myeloma Discussion • June 18, 2024
My Journey to Remission Without a Transplant
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I was diagnosed in October of 2016. A real big shock to say the least. I was started on velcade revlamid and dex. Didn't do great with the velcade so I was switched to kropilis and all my numbers started coming down. In January of 2018 I was MRD negative and have stayed the same since then. I feel good and hope ro continue on this path. I chose not to do the Transplant which I am happy about.
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Windy
Multiple Myeloma Discussion • June 18, 2024
Celebrating an Art Gallery Success
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So we're sharing our creativity? I'm smouldering, 2 years now. I'm an art therapist and paint to relax. I'm over the moon, my art has been picked for a gallery in the biggest city to me Hull in UK.
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emeraldOyster
Multiple Myeloma Discussion • June 18, 2024
Sharing My Triumph Through Pottery
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I was diagnosed in May 2023. I am in my ninth month of induction therapy. My hobby is pottery handbuilding. I created this piece to represent me triumphing over multiple myeloma. The base represents myeloma, like a vessel from a ship wreak at the bottom of the ocean, covered with barnacles and debris. The fish is me: emerging from the wreak and swimming up to the surface!
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Kathisu
Multiple Myeloma Discussion • June 18, 2024
Finding Normalcy Through Acting
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Acting is my “therapy.” When I’m performing, I forget myeloma and feel like life is normal again. I’m blessed to have these opportunities to live my best life despite my diagnosis.
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Iliana • Admin
Multiple Myeloma Discussion • June 18, 2024
Research Opportunity for Myeloma Post-ASCT
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Now enrolling people with multiple myeloma who have undergone autologous stem cell transplantation​​ (ASCT)​​. Participants in MagnetisMM-7 will advance research on a potential targeted treatment option for multiple myeloma, which could benefit future generations. For more details about the MagnetisMM-7 clinical trial, please visit: https://www.pfizerclinicaltrials.com/nct05317416-multiple-myeloma-trial?cmp=5ca0d465-6e7f-4fe9-b87d-8ed90a4bed3c&ttype=WEB
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BetterDot
Multiple Myeloma Discussion • June 15, 2024
Revlimid Side Effects: Do They End After Treatment?
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I want to start a discussion about revlimid. The uber expensive maintenance drug. I have been on 10 mg since 01/01/2023 and will be on it until 12/31/2024. The symptoms have dominated my day to day since 01/01/2024. When I hit a year in everything was amplified. The fatigue, nausea, neuropathy, balance, depression, severe muscled cramps then the newest severe GI symptoms that make me afraid to be too far from a bathroom. I do have some good days but when my bad days come they are bad. I am still working and really hope that come January next year I will drop some of the symptoms; muscle cramps, GI symptoms, malaise. I do a lot of pouting by myself and know the revlimid is working great to keep my labs in a great place. But, geeze I am tired of feeling poopy most of the time. My pharmacist in Hematologist's office has been great and offered to reduce the dose. I do not want to because again my lab number are beautiful. A nurse at the infusion clinic said people she has worked with do experience symptoms stopping after 2-3 months. Has anyone gotten to the other side and can report on this. I am a rational person and an RN myself (24 yrs) so I know the value of treatment. My other side is a whiny baby and want to feel an equilibrium for a better quality of life. Maybe work another 2-3 years and retire while in remission. I could go on longer about how stifled I feel but I would like anyone to tell me their revlimid journey. Thanks
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Love
Multiple Myeloma Discussion • June 13, 2024
Sharing My 6-Year Journey & What Helped Me
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I am here six years undetectable from Multiple Myeloma. I contribute more than 50% of My Success in my myeloma Journey in meeting Jenny through another organizations a myeloma symposium. One of Healthtrees representative invited me to a Crowd ? meeting there I got so much information from providers of healthcare. There was information on treatment team expertise, I met or got connected with Sparkcures and their help with finding the right Hospital prepaired me to know exactly what to request of my oncologist and submit before making that Journey across a couple of states for the appointment a wonderful experience. My Specialist was impressed that I got there and all the records that he needed were there prior to my visit. When it came time for my stem cell transplant I had had enough knowledge from having the opportunity to meet other transplant patience to know how to prepare for the hospital visit. And what things I could take to give myself a better mindset. Everyone was so encouraging and inspiring that I've committed to coaching. Partiacpating in Twin program allows my condition to help someone. And if know I am not alone. I even got the courage to rock my bald head and use it as an opportunity to tell everybody about the Wonders of Healthtree organization. In case they knew somebody that may have myeloma precursors or MGUS, Smoldering M or Multiple Myeloma. I call it my M&M's and thanks to Healthtree we are eating them up. Its all in your attitude I believe... lets inspire someone else. Turning an poetical into a opportunity is everything. You can win! Thanks JA . My Life is BETTER by the 🌴 #MarronRibbonsAllAround lover, OhiO
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sapphireShrimp
Multiple Myeloma Discussion • June 12, 2024
Sharing My Experience After Stopping Revlimid
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I was diagnosed with multiple myeloma in the spring of 2016 and then was given 20mg Revlimid (daily) and valcaid (weekly) until my light chains dropped from 1660 to 375. In December 2016 I received a stem-cell transplant, which did not fully cure my myeloma. For approximately three (3) years I continued with 15mg Revlimid (daily) and then stopped taking it. For about two years (taking labs every six weeks), my light chains vacillated between 130 and 150. Now here I stand with no ill effects but not fully cured.
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Marga
Multiple Myeloma Discussion • June 12, 2024
SCT Prep: Skin Care & PICC Line Tips?
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Hi all, It’s almost time for my husband’s SCT, next week and I have a couple of questions, (Sorry if these have been asked before, could not find an easy way to search past posts) Skin care What did you used for dry skin? I’m afraid his current products (lotion, oil) might be too harsh, especially after chemo. Aqua guard sheets what size did you get to keep dry the picc line? Is bigger better? Thanks, Margarita
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peachDodo
Multiple Myeloma Discussion • June 11, 2024
Building Hope: My Healing Hut Story
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In 2020 I was in a very dark place. Being diagnosed with MM and related renal failure the previous year, I put my hopes in a SCT to turn the tide. Unfortunately, it completely failed, plus I developed a pseudograph vs host disorder with a lot of suffering. Covid, because of my recent SCT, turned me into a hermit where I did not leave my house, except for medical visits, as I tried a series of traditional chemo therapies, with limited success. My prayers shifted from God save me, to God please end my life. It had been my dream to go to Europe to restore an old stone cottage in retirement. With all my dreams gone up in smoke, I decided to build an "old" stone cottage on our property, to build my strength, give me something to distract from my suffering and self-pity. I am not a builder but have done almost all the work myself. I am halfway through and will start the stonework this summer. Meanwhile, I started a monoclonal antibody two years ago, which put me into stringent remission, now for two years. The cottage saved my life, which I now call "The Healing Hut."
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Marla
Multiple Myeloma Discussion • June 11, 2024
Exploring Complementary Therapies
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Someone posted...I am doing infrared therapy hyperbaric chamber. And also ozone and foot detox it has helped me tremendously. Can anyone please explain what these are, where to get them, how they work, how much do they cost, etc.? I have HRMM 1 q gain. Would these be good for me?
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Iliana • Admin
Multiple Myeloma Discussion • June 11, 2024
New Nutrition Study for Smoldering Myeloma
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New study for Smoldering Myeloma patients! Dr. Shah from MSK is investigating whether a plant-based diet or supplements like probiotics, omega-3, and curcumin will improve microbiome composition. Complete a 15-minute survey to find out if you’re eligible to join: https://healthtree.org/myeloma/curehub/private/research/5jLN2I1z8ORyETSwrhNY?utm_source=social+media&utm_medium=connect&utm_campaign=nutrivention&utm_content=smoldering