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Swun.Luu

41d

I have recently been diagnosed with multiple myeloma with the main tumour around my pelvis. I have finished a phase of radiotherapy and now waiting to start my chemo. This is either going to be oral or sub-cut. Has anyone experienced anything like this? Anything to expect?

Top reply
    • Michele.PatientPower

      37d

      I am so glad you are here as part of our community. We are all here to help each other on our journeys. Are you seeing a hematologist-oncologist who specializes in Multiple Myeloma?

    • Michele.PatientPower

      37d

      I am so glad you are here as part of our community. We are all here to help each other on our journeys. Are you seeing a hematologist-oncologist who specializes in Multiple Myeloma?

    • LeylaGrau

      39d

      Thanks for sharing your story.I must say you're incredibly strong on the inside for reaching out for support. I went through this stage and I know exactly how it feels like.Everyone’s body has a specific way of reacting to MM, I can’t really tell how your body will respond but I can tell you how mine went and prolly this might help you. I was diagnosed in September 2019 and I started chemo shortly after. I was put on Elotuzumab , lenalidomide, and dexamethasone over a period of 4 weeks cycle which was repeated. I did 6 cycles over a period of 6months. I finished in this plan in 2020 and I have complete remission. I then had 15 days of radiotherapy in my right pelvis which ended in October. In late November I was admitted to the hospital for radiation colitis, part of my descending colon was resectioned. I lost my appetite, my taste changed and I lost weight. I did mostly soups and drinks recommended by my medical team. I think now my weight is beginning to stabilize. I didn’t get any infections because I made sure I kept good hygiene.I was on oral and slow-release morphine for the pains. I also received infusions to strengthen my bones every 4 weeks which will run for another year, but I still feel weak most of the time. I was only able to exercise for a few minutes at a time in a day. I won’t be going in for a stem cell transplant , I don’t think I’ll need it at this time since I am currently in complete remission. I hope this helps, please feel free to ask me anything.

      • Michele.PatientPower

        37d

        @LeylaGrau @LeylaGrau Thank you for sharing your journey. It’s very helpful. You are so strong Leyla

    • BobriBobur

      39d

      That was useful to hear.I am praying you get all the needed support here. I am 61 and mine was discovered by accident. I tripped, fell with fractured bone.When the doctors took the MRI they found a tumor behind my skull, hence the chemo. I had 15 sessions of radiotherapy which was ok except for the fact that I had continuous nausea which won’t go away! I also had persistent fatigue too. For now I think stem cell will be act of the picture for me considering my age as the main reason for this decision. I just keep saying to myself “This too will pass” this gives me the inner strength to keep on going. Keep on going, I send you prayers for strength and love.

      • Michele.PatientPower

        37d

        @BobriBobur @BobriBobur You are not alone in your MM being found by accident. Love your attitude of “This too shall pass.” Keep on moving forward.

    • Greeen

      41d

      Hi, I joined the community about 3 months ago and I have met alot of wonderful people here who have shared their stories and encouragement and it’s been super helpful. I want you to know that we are all here to help each other through this journey, you’re not alone. You have all of us here rooting for you. The thing I experienced about Radiotherapy is ,you can feel the side effects even months and years afterwards.After I had Radiotherapy i got sepsis and the doctors werent able to tell where exactly this came from. At first they were going to treat me for Vasculitis. My medical team brought in a heamatologist to look at my situation. He mentioned that I had radiation colitis. Felt I had to share this to encourage you, and also suggest that you ask questions and let your medical team address your concerns. My thoughts and prayers are with you in this walk.

      • Michele.PatientPower

        37d

        @Greeen @Greeen Sorry you had after effects like this. Thank you for being part of our community here and for sharing how it’s helping you in your journey. Yes! We are all here to help each other.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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