Ibelieve's Journey with Multiple Myeloma

Patient: Multiple Myeloma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 7 years ago, Female, Age: 59

  1. 1
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
    Ibelieve's Avatar

    Diagnosed

    Oh No

    I had been told in 2005 that I was a fluke and did not have bone cancer but I had an outrageous amount of protein in my body. I was put on a monitoring lab schedule of every 3-4 months to check for cancer. I went for a while then life got busy between family, work, going to college, etc. Also, I was absolutely terrified of having blood drawn plus I did not believe that I would ever get cancer. (Looking back at this thought makes me wonder how I ever thought I was immune to cancer.) The first of June 2010, I fell down two stairs and passed out for a couple of minutes. When the tech x-rayed my foot, he let it slip that there were liaisons or something on my bone. I knew instantly that I had bone cancer. Going to the doctor and having the test ran simply confirmed it.

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  2. 2
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    Father's Day 2010 weekend, I ended up in the emergency room due to being in a lot of pain, weak, and almost passing. My blood count had dropped dangerously low plus I had too much calcium and potassium. We, the doctor and myself, were still waiting on all of the official test results to come back confirming I had multiple myeloma even though we were 99% sure that I had it. I spent a week in the hospital receiving blood, platelets, and other drugs. While I was in the hospital, my port was put in. The surgery happened so fast that I did not even have time to think about it. The port has been a blessing. This was one of the most difficult times for me. I came home very sick. My husband, young adult children, parents, and siblings worked it out to where someone was with me 24 hours a day. I had difficulty climbing the stairs in my home. My husband and father built a ramp to the front door which was a blessing. This only left the stairs to the bedrooms/bathrooms for me to deal with. Before I went in the hospital, I could sit on my hair. It was long and straight - wash it, dry it, and brush it. It took years to get my hair that long. While I was in the hospital, due to being so sick my hair did not get brushed often. When I came home, my hair was matted and knotted so bad that it had to be cut off up to my shoulders. I cried and cried when my husband and sister had to cut my hair. My husband went out and bought a two piece heart. He wears half of the heart and I wear the other half. My husband said when he gave me the heart that we were in this together. My co-workers sent cards, brought meals, sent a goodie box of different items, and prayed. My husband, children, parents, siblings, and co-workers were there for me at the beginning and continues to be there for me.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was extremely sick at the beginning. I took and still take ondasetron for nausea. Velcade was given through my port along with Zometa. I lost 40 lbs due to lack of appetite and energy. My husband, children, and parents worked out a schedule to get me to the hospital twice a week for a blood transfusion and occasionally platelets. Chemo gave me such severe heartburn that I took Protonix 2-3 times a day along with eating 5-6 Ultra Strength 1000 Tums each day. Everyday I still take the heartburn medicine and tums. Velcade quit working after about 3 months. Then, I took Velcade along with 150mg of Thalidomide but unfortunately, it put me in the hospital. My body could not handle both drugs at the same time. Upon leaving the hospital, I only took the Thalidomide but now with dexamethasone which I have a love hate relationship. I was determined to be strong and keep things a normal as possible. I had went back to work in August but ended up taking a leave of absence from the beginning of September until mid October. Looking back, I went back to work way to early. I was tired and exhausted all of the time. The only thing I could do was work, get blood twice a week, and sleep. My anniversary, kids birthdays, Christmas, and Easter came and went. I was simply too tired to enjoy much of anything.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
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    Clinical Trial

    The Thalidomide worked for a while then the dosage was increased. The new dosage of Thalidomide 200mg worked for a long time until just the last 3 months. When it quit working, I stayed off all cancer drugs except the dexamethasone (love/hate it) for about a month and a half. I started 25 mg of Revlimid with the dexamethasone at the end of August 2011. Revlimid made a big drop in the protein but by mid September I spent a week in the hospital with pneumonia. Fighting pneumonia has been difficult. I did not realize how much pneumonia would take out of me. The doctor has put me out of work from September until January. After coming out of the hospital, the Revlimid dosage was decreased to 15mg. Next week, labs will be drawn to see if the 15mg of Revlimid are making a difference.

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  5. 5
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
    Ibelieve's Avatar

    Anemia (low red blood cell counts)

    Side Effects

    I have had several side effects but the most severe has been anemia. I have received as of date 34 units of blood and about 10 units of platelets. Since I have received so much blood I have picked up two antigens, therefore; it takes about 16-24 hours to match my blood.

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  6. 6
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
    Ibelieve's Avatar

    Family

    Celebration

    I celebrate God and having a supportive husband, children, parents, siblings, aunts, uncles, nieces, nephews, friends, co-workers, doctors, nurses, acquaintances, and strangers. Sometimes, I forget for a moment that I have cancer because of the support that God has blessed me with.

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  7. 7
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
    Ibelieve's Avatar

    Energy and independence

    Loss

    My biggest loss has been in the form of energy and independence. I do not have anywhere near the amount of energy I had before cancer. I find that I can do something for just a little bit then I have to stop and rest for long time. Also, I have to ask for help doing some things that before I did independently.

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  8. 8
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
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    Oh No

    This person has yet to add any details about this experience.

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  9. 9
    • Ibelieve
    • Experience with Multiple Myeloma
    over 5 years ago
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    Breakthrough

    Celebration

    God continues to bless me. Revlimid and Decadron is starting to work on the cancer. My Abn Protein Band (M-Spike) went from 4.1 (Oct 25) to 3.9 (Nov 23) to 2.4 (Dec 12). To make sure my body is ready for the 25mg of Revlimid again since having pneumonia, I just started alternating 25 mg and 15 mg of Revlimid every other day. (ex: Mon - 25mg, Tues - 15 mg, Wed 25 mg, . . . ). Revlimid is taken 21 days then off 7 days before starting over again. Currently, I am taking 40 mg of Decadron one day a week including the off week. I am looking forward to another big protein drop when the next protein check is done.

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