MiriamMarino's Journey with Multiple Myeloma

Patient: Multiple Myeloma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Female, Age: 63

  1. 1
    over 2 years ago
    MiriamMarino's Avatar

    Just Diagnosed

    Oh No

    Hello, I was diagnosed with Multiple Myeloma in June 2016.

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  2. 2
    over 2 years ago
    MiriamMarino's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    The induction period lasted 4 months using two chemotherapy meds and a steroid. I worked throughout the induction period out of necessity but do not recommend it to anyone. Focus on taking good care of yourself and the hope of remission.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    over 2 years ago
    MiriamMarino's Avatar

    stem cell transplant

    Procedure or Surgery

    The stem cell transplant was effective for only 9 months. The cancer returned worse than before and treatment for relapse is ongoing.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    over 2 years ago
    MiriamMarino's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I am undergoing treatment for relapse of Myeloma. A port was inserted after 6 months of treatment for easier access but in actuality, the port has caused me continual discomfort, and pain on treatment days. It's functional, so it is staying in my chest. I just need to endure it for as long as possible. Treatment was supposed to finish in June of 2019 but I was informed by the Oncologist that treatment will not end. I'm just thankful treatment has achieved remission. However, in order to stay in remission as long as possible, I must stay in treatment.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    over 2 years ago
    MiriamMarino's Avatar

    What will I do next?

    Decision Point

    When I began treatment for relapse Myeloma in January 2018, I was told it would run through June 2019, a total of 18 months. Now, I am advised treatment must continue beyond that time with the goal to stay in remission. While I am so very thankful the treatment has worked to attain remission, I am wondering how long I wish to endure the side effects of chemo in order to stay in remission. The treatment has been modified to once a week infusion every other week, as opposed to twice a week for three weeks in a row and one week of rest. The modification of treatment is par for the course. It was expected. But ongoing treatment beyond 18 months was not expected. So, it is decision time. I have to decide if it is ok for the quality of my life to be impaired moderately by treatment, or stop treatment after June as originally planned. Praying about this as I breathe. Thank you for letting me share my thoughts. Your feedback is appreciated. Love.

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  6. 6
    over 1 year ago
    MiriamMarino's Avatar

    Darzalex, Pomalyst and Dexamethasone - started November 20, 2019

    Drug or Chemo Therapy

    I completed the recommended six months of treatment with Darzalex and am now on maintenance infusion once per month. Dexamethasone and Pomalyst (oral chemo) continue but modified dosage. Instead of 21 days on, and 7 days off, I take Pomalyst 7 days on, and 7 days off, and repeat. The good news is the treatment has worked to achieve remission, but in order to remain in remission as long as possible, I must continue maintenance treatment. Thankful to have made it this far. Now, to stay healthy during the COVID 19 situation.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  7. 7
    about 1 year ago
    MiriamMarino's Avatar

    Remission

    Celebration

    It is the third time I hear the words, "Treatment has attained remission." When I first heard it for the first time, I celebrated and thanked God to have made it through. But it returned 9 months later, and I had to undergo an 18-month treatment for Relapse. When I finished that treatment, I heard the words, "Treatment has accomplished it's goal of remission." But it returned worse than before three months later. What happened? I do not know. But it was disheartening. Still, I submitted to treatment for Relapse, and this time with immunotherapy Darzalex, Dex and Pomalyst. And after 6 months of intensive treatment, heard the words again, "Remission attained." I want to celebrate. Really I do. But I've gotten to a place where I accept that Myeloma can return in my case and that I must be prepared to fight back! I will not give up! I can celebrate the completion of a 6-month treatment that now turns into maintenance. I can celebrate that through it all God has been with me. He has been with me through the loving people in my life. Through the medical providers who have monitored my care, Dr. Voorhees, Dr. Atrash, Dr. Usmani and the medical Team. Through the several resources available to keep me informed and educated about Myeloma. Through the Leukemia and Lymphoma Society who help financially to be able to afford treatment. I am especially grateful for the kindness and professional assistance of the Cancer Care Social Worker/Spvr., Anne Kinlaw, of the Levine Cancer Institute. I can celebrate that there are good people in this world and I have encountered many of them on this journey. Thankful. Blessed. So very grateful to all and for all in my life.

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