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Multiple Myeloma

Hello. I'm Crys.

Hi, my name is Crystal. I am 44yrs old and I was diagnosed with smoldering multiple myeloma in Oct 2018. My dr had ordered labs every 4 weeks and on Jan 28 they had reason to recheck. So the did so on Thursday Jan 31. The results came back on Feb 4 that I am in active MM. I go on the 7th to get Xgeva injections and to get ready to start Revlimid and dexamethasone. I am completely new to this and would love to have more of an idea about what the “new normal” is going to be. Thanks

  • Post #1
  • Thu Feb 7, 2019
Hi, I'm Xradjun

Hi Crystal— I was diagnosed with MM back in 2005. I’ve gone through radiation, stem cell transplant, Velcade and now on Revlimid. I’ve been on RevDex for several years now and it has worked great for me with only minor side effects (mostly diarrhea which is easily controlled by Imodium). I don’t know what Xgeva is but I’ll swear by Revlimid. Good luck!

  • Post #2
  • Fri Feb 8, 2019
Hi, I'm David P B.

Crystal, I was diagnosed with MM in 2013 and had treatment similar to the person in Post #2. I had a stem cell transplant in 2013 and have been in remission since then. You’ve probalbly heard that MM is not curable yet, but is very treatable. Expect side effects from the drugs. Mostly muddled thinking (also called chemo-brain), worry and maybe some fear, but that can be managed by support from your doctors, family and friends. An excellent book to read is Tom Brokaw’s “A Lucky Life Interrupted”. It tells of his battle with MM. Good luck. Stay positive, keep involved and doing things!
Dave B.

  • Post #3
  • Sat Feb 9, 2019
Hi, I'm Phyllis

Hi,Phyllis here. I was diagnosed with Multiple Myeloma like
Several others 2013. I will soon be 73 like several others I have read about! i am still trying to figure out ’what’s next! ". i have had three different Oncologists in the past 5 years, each have moved to larger cities. I’m hoping this new one sticks around longer.
i was started on Revlimid and Dexamethasone. Different dosages. i go in about every 3 weeks now to get blood checked. No one has ever mentioned a stem cell transplant or any other treatment except multitudes of vitamins minerals and infusions. I spend most of my time doing many different crafts, hobbies, and working in the yard.
thanks for listening.

  • Post #4
  • Wed Feb 13, 2019
Hi, I'm David P B.

Phyllis, I’m pretty sure you have to be in remission before a stem cell transplant is considered. Ask your Oncologist. Ask lots of questions! Crafts, hobbies and working in the yard are great – keep it up!
Dave B.

  • Post #5
  • Sat Feb 16, 2019

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