Karen4's Journey with Multiple Myeloma

Survivor: Multiple Myeloma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 5 years ago, Female, Age: 58

  1. 1
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
    Karen4's Avatar

    Diagnosed

    Oh No

    I am not a person who gets sick much. However, in January of 2010, I got the flu and then pneumonia. OK, fine. I hadn't had the flu in a long time. Later, I noticed it was so difficult to do some of the physical things I enjoy, the most telling, walking around San Francisco with my best friend. I love walking up and down hills, but I kep having to stop and rest. Later that summer, I woke up with a fever with no signs the day before I was getting sick. Dosed myself on Tylenol and went to work any way. Later that day, I felt my fever coming back so went to our Express Care Clinic. After my doctor took a little recent history, he said, "well, it's probably just a viral syndrome, but you have some other issues in your history that make me think we should get some lab work on you." I had been very tired the few months before and had also lost about 12 pounds, but I thought it was just stress related as work had become very intense. The next day, he called me and requested that I come get a little more lab work done. He said I was significantly anemic and he wanted to check a little further. About 2 days later, he called AGAIN and asked if I could come back to see him and, if possile, could my husband or someone come with me. I'm thinking, what now? So, I took my sister. It was that afternoon he told me he thought I might have multiple myeloma and described the disease to me a little. ME-CANCER? NOOOO!!! My sister and I cried together, then I proceeded to go home and tell my husband, call my mom and my dad. Then I got on the computer and started researching the disease. I was not impressed with what I read. About a week later, my SPEP and UPEP came back confirming the diagnosis. I saw 2 hemoncologists-one with Baylor, one iwth MD Anderson. I went with MD Anderson. My first visit was August 5th. My bohe marrow biopsy showed 84% plasma-no WONDER I was anemic!! I had my first chemo on August 9th.

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  2. 2
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
    Karen4's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I began a cycle of Velcade, Dexamethasone and Cytoxin. When I finished the first cycle, my 'myeloma proteins' had dropped significantly which was a good thing. However, they decided my proteins weren't low enough to consider stem cell transplant (which was our ultimate treatment goal), s they decided to give me a second cycle. Unfortunately, during the first cycle I had developed an infection from a very small scratch that landed me in the hospital. After the first Velcade treatment on cycle 2, the infection returned and BAM, back in the hospital. It was decided to discontinue the second cycle. The labs that followed showed no further improvement in the proteins. SO, they decided to do hyper-CVAD-cytoxin, velcade, adriamycin and dexamethasone (I HATE THAT STUFF!) This was a continuous infusion over a 4 day period. I missed my niece's wedding and almost missed Halloween. A couple of weeks later, I lost my hair for the first time. Upon return to MD Anderson for labs, it was discovered that this intense chemo didn't work either. I was devastated. Merry Christmas to me! We decided to try a clinical trial of Revlimid, Thalimid and Dexamethasone (I HATE THAT STUFF!!!). It made me tired, the Dexa made me weird and jittery, but I did anything they asked of me. After 4 months there had been significant improvement and I was ready for stem cell prep. I learned to give myself shots of Nupogen to boost my cell count. I had to go in every day for a week to collect the cells. Once they had an adequate number, they did the Melphelan-an intense chemo. This was done over a 2 day period. The third day, I rested and began prophylactic antibiotics. On Thursday, June 2nd, I got my stem cells back. Then they began monitoring my labs every other day. I was tired, nauseated, and, within 7 days, began losing my hair for the 2nd time. I stayed home all summer to recover. After the first two weeks, I began to feel better and the frequency of the labs decreased. At the end of 2 months, I was seen by my transplant doctor and all seemed to be going well. I am being monitored about once a month now, with my 6 month post-transplant visit coming up in early December.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
    Karen4's Avatar

    Clinical Trial

    The Revlimid/Thalomid/Dexa clinical trial was my saving grace. It was the only thing so far that finally pushed my cancer down enough to proceed with the ultimate treatment-stem cell transplant. I've always believed in participating in research or clinical trials. How else were they going to find what works. I had been declared as having a 'resistant" and "aggressive" form of this disease which was terrifying. I'd have done just about anything to make it stop. I also participated in a clinical trial for the stem cell transplant where I received Revlimid for a few days just prior to chemotherapy.

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  4. 4
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
    Karen4's Avatar

    Chemo brain

    Side Effects

    Chemo brain was probably the worst side effect of all. Of course, I went through the low blood counts, fatigue, nausea, etc. But to me, the worst was chemo brain. It made it difficult to carry on a conversation, do my work, drive-ANYTHING that made me have to THINK! I HATED IT, and the dexamethasone was the culprit. Did I mention I HATE THAT STUFF!!?

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  5. 5
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
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    Remission

    Celebration

    The drop down list had several things I celebrated-getting my hair back, though that is still a work in progress for the 2nd time, the breakthrough with the clinical trial, the fact that I'm still here. But the best was knowing I'm in remission. I didn't quite make it to FULL remission, but I'm in a good solid partial remission and feel better than I've felt in 2 years. I was stage III when diagnosed. My bone marrow plasma was 94%. When I look back at old labs, I was 'brewing' this disease since at least 2007, but no one connected the dots. I probably wouldn't be here today if my doctor hadn't seen the red flags and followed his instincts by getting more and more lab work. I was thrilled to have another birthday, and look forward to the next one coming up in January. I'M STILL HERE!! I got to be at my daughter's wedding in April, my step-daughter's graduation in May, and plan to be around to see my grandchildren arrive in the future.

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  6. 6
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
    Karen4's Avatar

    Other

    Drug or Chemo Therapy

    I am now on maitenance therapy - Revlimid once a day. Since I never reached full remission, and they consider my disease resistant, they decided it was best to continue some form of maintenance to help prevent the disease from creeping back. I just started it this week.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  7. 7
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
    Karen4's Avatar

    Other

    Procedure or Surgery

    In December I will have a bone density, bone marrow biopsy, and in-depth labs. I will also get my first round of immunizations. The chemo pre-transplant kills EVERYTHING, so I no longer have the antibodies I spent 50+ years building to keep me well. I have to be careful around large grous of people and children still, but that will change once they immunize me again.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  8. 8
    • Karen4
    • Experience with Multiple Myeloma
    over 3 years ago
    Karen4's Avatar

    Other

    Oh No

    I saw my myeloma doctor on Thursday. Good news is, the osteoporosis that has developed in my spine and hip can be managed with Boniva and calcium/vitamin D supplements. But, something he said really bothered me. He said I'm in a stable partial remission, and (here's the kicker) a lot of patients in partial remission live UP TO 10 years. UP TO 10 YEARS!?!?!?! I'm 54 years old! In my mind, that's not a lot-it doesn't even take me to retirement age! I plan to provie him wrong by surviving MUCH MUCH longer and in GOOD HEALTH! Isn't it up to us to try and beat the odds?

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