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truefiction's Recent CancerCompass Activity

  • truefiction has replied to a post on the message board

    If possible, find an MM specialist. A general onco...in my opinion...is nothing more than WebMd on legs. They typically know only what they read. Where as a specialist has usual been published, conducts studies, has peer reviewed findings, and most importantly, knows the disease. I would want to know type of myeloma (heavy chain/light chain); FISH results (are there any cytogenetic abnormalities); risk based ...

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    • truefiction has replied to a post on the message board

      I believe the Dex is your culprit. I also found white flours, dairy, and even water to taste terrible. Also, though the Dex will mask inflammation while taking it, it can cause very bad joint and bone issues. So when you're not riding a Dex high, you might feel like you've been rolled in a blanket and beat with a bat.

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      • truefiction has replied to a post on the message board

        Im still confused on what test you're referencing....sorry. I assume it is an SPEP and IFE. The SPEP will tell you how much paraprotein is present and the IFE will to you what type and whether it is your myeloma specific protein. It is possible to have abnormal protein present and it not be related to your MM. So back to your question, the doctors may be seeing transient abnormal proteins unrelated to your MM...

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        • truefiction has replied to a post on the message board

          The pathology report from the IFE and/bone marrow biopsy will identify what type of paraprotein is present, if any. Lets use an example or two. Say you're IgG/Kappa MM type. Lets say your labs show an increase in IgG and Kappa. Does that mean your myeloma is active? Maybe not. Could be an immune response to a cold virus and other inflammation causes. The pathology of your myeloma is specific and rarely will chan...

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          • truefiction has replied to a post on the message board

            The paraprotein level/numbers, what test results are you citing as 3.8-4.1? When you say the doctors don't seemed concerned, what kind of doctors and who are they?

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            • truefiction has replied to a post on the message board

              I'm sorry for your loss and hope your family finds peace.  Sounds like he fought the best fight possible and should be an inspiration to us all. Regards,

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              • truefiction has replied to a post on the message board

                I stand corrected. I went back and read the understanding free light assay pdf and your numbers may indicate active myeloma. Was an IFE conducted? If so, what did the pathologist say? Have you had treatment before? Im still trying to understand the low Lambda.

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                • truefiction has replied to a post on the message board

                  Looks more like a result of your kidney function to me. If you had a kappa monclonal protein concern your kappa would be high. If lambda, it would be high, not low. However, your high ratio indicates something related to kidney function which can be caused by things other than monoclonal protein in the urine. Thats my opinion anyway

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                  • truefiction has replied to a post on the message board

                    The international staging for multiple myeloma doesn't include the amount of monoclonal protein detected. Either the doctor or the husband is confused. The old method (durie-salomn) did include amount of monoclonal protein. However, the newer most accepted scale is based on Bm2 and Alb. Keep in mind, staging means nothing to the patient. It simply measures tumor burden. Stage 1 is treated the same as stage ...

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                    • truefiction has replied to a post on the message board

                      Yes, I have. Many myeloma patients experience rib and back pain. Of course the stomach takes a beating from the drugs and steroids.

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