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    lansford_cub shared an experience

    Oh No (Injured on fall): It has been about 5 years since I was diagnosed with Myeloma. One of the very first treatments I started was zoledronic acid (Zometa). The myeloma had presented it self as crushed vertebrae and sore ribs. That was five years ago and countless infusions of zometa, and thankfully I stuck with it. I was putting drywall on my garage ceiling last weekend with my 80 year old Dad and 19 year old son when I fell of the ladder from 6'. I landed very hard on my right hip and shoulder. All I could think about during the five minute plunge was broken hip, cracked pelvis and crushed shoulder. It did seem like five minutes!

    Much to my relief I walked away (walked may be an over statement - hobbled) with pulled muscles in my groin and hamstring. No broken bones after falling 6' onto a concrete floor! The regular infusions must have paid off!

    I did learn that myeloma patients do not bounce very well! One week later I am almost as good as new and ready to start umpiring girls high school and college fastpitch again!

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    Wall_photo

    Well that takes the mystery out of that!

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    User: warrens

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    lansford_cub shared an experience

    Other Care: Three years post transplant came and went with little or no change after that. Sometimes waiting for the other shoe to drop. But for now all is good! Each Dr visit is a little scary.

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    lansford_cub wrote on Antolin's wall

    Antolin,

    When I was first diagnosed I started tracking numbers, surfing the net, etc. Shortly after transplant, I was talking to an MM friend and he gave me some advice that I follow to this day. He said MM had already taken enough of his time through transplant, appointments, meds, etc and he wasn't giving it any more time...that struck home. I was spending hours and hours a week doing this "stuff". I stopped most of it and leave it to my oncologist ant he hematologist from Rochester. I still try to stay educated but don't blog, don't do a lot of surfing, etc.

    I am just out trying to lead a normal life - as normal as it can get. MM is not going to take any more of my time.

    I had started a blog a few years ago Re: Transplant but stooped, it took too much time! Here is the link http://ndmyeloma.healthblogs.org/ . I was getting bombed with spam so haven't done anything for a few years...... blog goes from planning for transplant through 1 years post SCT.

    Kevin

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    lansford_cub wrote on Antolin's wall

    Antolin,
    My experience may or may not be typical but I will go over what I experienced. My stem cell transplant was 4 years ago on Dec 4. I was on len/dex as well leading up to the stem cell transplant. I actually started the melphan on my birthday (Oct 31)! No real issues with the melphan to speak of, just felt kind of crappy hair did fall out eventually but can remember if it was from that or not. The apheresis went OK, uncomfortable with a 5 inch steel needle in one arm and another in the other. I collected for 2 days (5 hours/day) and had enough cells, then waited to put them back in. Well, it was determined that I had contracted H1N1 in the middle of all of this so I was sent home (couldn't stay at the Gift of Life house, couldn't be in general population) with Tamiflu. I spent Thanksgiving at home with my family...that was nice!

    Returned to the clinic and had the stem cells put back in, kind of uneventful, it took something like 7 minutes and it was all over. I then stayed at the GoL house until Dec 23, trudging back and forth to the clinic twice a day for blood work. It was cold and snowy in Rochester but I was determined to walk it everyday - kind of personal thing. Spent one night in hospital, seems that c. diff. (Clostridium difficile) had take over my GI tract....not very pleasant - diarrhea for a couple of days.

    Can't say anything really exciting happened other than the H1N1, never really had pain except for the Neupogen made me hurt like XXX in the sternum and hips. My mother was my caregiver and was instrumental in charting all of my meds and making sure that I took them at the right time. She had a big sheet of butcher paper on the wall with a chart of what I took, when, with a check mark if I did. I believe that was very important.

    These are just my experiences, it has been a few years but I looked back on a few blogs and couldn't really find anything eventful to write about. Retuned home on Dec 23, went back to work the first week in january for 4 hours a day and then Feb was full days.

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    • Antolin's Avatar
      Antolin

      Thanks for sharing your story Lansford, I was told that Neupogen causes pain during the mobilization part, how much in the scake of 1 to 10? do you think that during the apheresis/harvest period one would be able to work?

      I was told I would have a central venus catheter placed on a large vein on my chest. Sounds like yours was in the arms. I would like to be able to work since I don't have a lot of FMLA days available at work.

      Sorry to hear you contracted the swine virus, I guess anything can happen when the immune system is down. do you have any pointers on what to watch out for in terms of staying germs free outside of getting rid of carpet and washing your hands constantly? I am glad you were able to spend time with your family during Thanksgiving.

      Do you recall how soon after the apheresis you started the high dose melphalan chemoterapy? From what I read, high dose chemoterapy is just as bad or destructive for the body as cancer is. Still it does not seem like there are any other ways around chemo (even the famous Gerson juice therapy).

      Does the oncolodist still monitor your blood for bad plasmas or Myeloma? Are you currently in maintenance chemotherapy?

      I am glad to hear you are doing well and working, thanks for your reply :)

      almost 5 years ago