• Frantic34's Avatar

    Frantic34 wrote on Rolltidelynne's wall

    I was reading some of your comments and became intriqued. It seems me and you are in the same boat. I hope you don't mind me following you. I am still stuck on how I contracted MM. No one can seem to even give me idea where it came from. This is why I be reading comments. I was diagnosed in May 2008 after frequent bouts of pneumonia.I had a stem cell transplant in June 2010. I am currently taking Revlimid along with IVIG and Arieda treaments. I am currently in a remission state but still suffering from Neuropathy, Depression, Sleep Apnea and Asthma but all in all life is good. Just wish I knew how I got this and how long my remission last. My name is Sue and you can check me out on facebook as Suellyn Strong. Hope you don't mine me following you.

  • BoiseB's Avatar

    BoiseB wrote on Rolltidelynne's wall

    Lynne Your name has been on my prayer list for a long time but a week ago it jumped out at me. How are you doing?

  • Rolltidelynne's Avatar
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Greg's update about being blessed compared to others suffering worse than us is absolutely correct!
    I'm sorry I've been out of touch here for quite awhile. I've had some issues n responsibilities that I had to deal with. Glad to report most of those are resolved and good:)
    I do need to let y'all know ( those I've gotten close w over the years:) y'all know who y'all are!!) that I'm not in remission any more. I start a new regiment of rounds of chemo this week once ghe meds are squared away. It was discovered in my body bone scan. The protein in my blood had elevated n gone down back in forth which gave the Drs concerns n they ordered the scan. The MM returned in my right arm. I'm not surprised since I had been having unexplainable pain in my right hand, remember? I had test after test run n it couldn't be diagnosed?!?! Well anyway that's my theory lol. I'm going to be taking revlimed, velcade ( pill not IV) n of course dexamethazone 3 weeks on /one week off. But I'm back if anyone needs me:))) I've missed y'all!!!!!

    3 Comments
    • DonnaSue's Avatar
      DonnaSue

      It's good to see you post again, Lynne. I'll be praying for you. The last time I called the nurse for my numbers she hesitated, then said it was good. So, I got a printed report and my Kappa is in normal range, Lamda is in normal range, but the ratio is creeping higher. I don't know what that means. I'm moving to a new area in a few weeks and will have a new doctor, and I will quiz that doctor about my own results.

      about 1 year ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I was so happy to see your name on a post, Rolltidelynne! I am not happy to read this update that your cancer is back.

      I will be praying for you and your doctors and hoping you go back into remission soon.

      about 1 year ago
    • jessey's Avatar
      jessey

      Glad to know you are again reaching out. True confession is good for the soul. I was toLD I was also in remission as it turned out I was not in complete remission. Decided to take a medication free, lasted all of 4mo.amf showed, up fiercely n another area, went 14 radiation treatment, only to be put on Revlimid/dex combo, then rediscovered both femor bones both pelvic hip joints need extensive, help, the he!ontologist, say it out of her league and refers me to a oncology social worker, and mental support.
      Guys I am like 2 years into this, all I wanted was a small window to normal, finding out there are no days off from this, I feel like a victim of domestic violence some day, scared to leave home alone, cannot visit places with steps, starting to wear depends.
      Lynn, you are resilient, you will do what you need, I gain a lot from your post,. Judy from the south, good looking in, sorry it took so long / I was trying to act like a grown up

      about 1 year ago
  • Rolltidelynne's Avatar

    Rolltidelynne posted an update

    Hi everybody:) Sorry I've been away from here a little while, it's been a little cray cray. A few short updates- first I feel great:) Went to my drs Thursday. They ran several tests, pics, etc - I've lost 1 1/2 inches, having trouble w/back curvature n it hurts:( they are fitting me for a brace- a few discs are breaking down n worried about compression. Also increased my MEDS CUZ I've built a tolerance. Easy fix. Next, I have neutrapenia. Trying to stay on revlimed- just have to wait n see. Have any of YALL experienced either change w your bodies?!?! I'm not upset, not worried but of course my daughter is! Ugh ( she worries bout everything!) Should I tell my sons? One lives far away. I'm just not sure if worth bothering them?!?! Thoughts?? Thank YALL, I've missed YALL!! Happy ❤️ Day:)

    6 Comments
    • BoiseB's Avatar
      BoiseB

      Happy Valentines. So sad to here about your back. If any part of your spine hurts your whole body hurts. Will pray for you at church today

      over 1 year ago
    • Kebohs' Avatar
      Kebohs

      Feel better. It's not easy dealing with a painful back. Many blessings

      over 1 year ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi Rolltidelynne!

      You have been on my mind today and I realized I haven't seen any posts from you in a long time. So, I dropped by your page ... and came across this update. I'm glad it is overall a positive update ... though it does sound like you're having some problems!

      Still, I am glad that you sound happy and content!

      Please drop by and visit with us from time to time!!!

      over 1 year ago
  • Rolltidelynne's Avatar