Rolltidelynne's Journey with Multiple Myeloma

Patient: Multiple Myeloma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 5 years ago, Female, Age: 55

  1. 1
    almost 4 years ago
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    Other Care

    Had stem cell transplant. Currently in remission. Side effect from treatment neuropathy. But otherwise feeling great loving life:)

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  2. 2
    almost 4 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    If you could have side effect I did:) From neuropathy to allergic to things never been allergic to prior to diagnosis lol.

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  3. 3
    almost 4 years ago
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    stem cell transplant

    Procedure or Surgery

    Although I put minimal side effect it's because my doctors, once I got past my nurse, were able to get me the medicines I needed to manage my pain n neuropathy. Also I had unexpected depression 4 weeks after transplant. That stemmed from fast recovery, speed in which they moved in my treatment, and the extreme underestimation chemo had on my appetite. I will gladly explain all these in detail if someone needs advice or just are curious.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    almost 4 years ago
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    I had to deal with one nurse who made my recovery very difficult at times:(

    Decision Point

    I am a very easy person to get along with and I relied on my doctors/ nurses to guide me. But I learned very quickly that although my doctors were very knowledgable, attentive, and kind, my nurse was my life line to them. I was never one to run to the doctor. This continued after my diagnosis, if I called them that indicated something was wrong. However for whatever reason , my nurse NEVER believed me. My most recent example was I was put on a maintenance program w Revlimid. I am familiar w Revlimid due to receiving it prior to my transplant. But this time was extremely different. My right hand swelled twice its size and the pain was unbearable. Having had issues w my nurse in the past I called the pharmaceutical nurse who was adamant I should see my hematologist n discontinue taking the Revlimid. She instructed me to call my doctors. Of course I took her advice ( she also called). I was met w hostility and and refusal to relay my concerns because my nurse decided I could not be having a reaction as I described. The pharmaceutical nurse was never returned a call. I had to wait three weeks to see my doctor. At my appt I told him regarding my two phone calls to his clinic and my call to the pharmaceutical nurse and her continued weekly updated calls ( she made to me) until my visit w him. Much to everyone's surprise there had not been a note regarding me calling. It was determined I had a blood clot . Luckily it went away unassisted by medical treatment but the outcome could have been much different. I've learned to be much more assertive n proactive w my own medical care. That nurse has been removed from my care n I call my doctors directly now. Remember I'm not one who ever calls unless absolutely necessary. Also NEVER let someone accuse you of "abusing" your pain mess. No one knows your pain except you. The doctors can see through their tests the dage you received prior to treatment and they will know if your pain mess are warranted through their tests. So NEVER be afraid to ask questions or insist on a treatment, appt, or anything you feel you NEED:)

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