kappa/lambda/ Multiple Myeloma
Speaking only for myself. I was diagnosed with multiple myeloma 1 1/2 years ago. I drove myself crazy with the out of normal range test results. I’ve learned to trust my oncologist and medical team. They look at the whole picture and study trends. When I board an airplane I don’t worry about any gauges that are out of normal range. I trust the pilot and crew to get me safely to my destination. Worrying only detracts from enjoying every day, and will not change the eventual outcome of our lives. By nature, I’m a control freak – but I’ve learned to let it go. I know this is not the answer you are looking for, but it is what works for me. Good luck with your journey.
As a previous poster mentioned, trust your Oncological team, but I would add, that if you are concerned about any of the individual test results, as your oncologist directly. They should be more than willing to explain to you what they are looking for and looking at.I know that I have learned a great deal form asking simple questions. After Chemo, Radiation and a Stem Cell Transplant, I had noticed that some of the kappa and lamdba proteins started going up and was concerned. My oncologist explained that not only the values but the ration of the 2 proteins to each other is looked at as well. While I eventually did fall out of remission, a new monoclonal antibody treatment has it back under control. I am told that if it drops out of remission again there are more new treatments waiting in line. Knowing that, helps me keep my sanity.
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I was diagnosed stage 3 MM in 2006. I am female and was 47. Healty, active, 1st yr was chemotherapy. 2nd yr 2 stem cell transplants than since Revlimid/Dexamethasone. 14 yrs later I am on Velcade shots every 2 weeks. I am healthy enough but the damage is done. My bones are a bit thin but I have not had any fractures. My life is so different now but other than running, jumping and heavy lifting, I feel great. I trust my doctors. If I had 1 caution to speak out, it would have to be the I.V. Zometa. It has strengthened my bones but my side effects were BRONJ. I have lost teeth and now going thru jaw problems. Zometa cements the jaw bone so well it doesn’t let enough bloodflow to keep it from slowing dying. So altho it happened to me, rare happening but not so uncommon. Please be aware of long treatment of Zometa. It stays in your bones for approximately 10 yrs after stopping it.
MM is not a pleasant cancer but life can normal once it is stabilized. I wish everyone the best. My saying is " I will die with it but not from it".