My RA doctor sent me to an Oncologist and her reason to me included such words that I could not get it. All I remember is that something had to be checked out and they will try one thing and there could be some other means…bla bla,… I have not been good about asking direct questions. Maybe I don;t want the answers. But now after two visits to the Oncologists and one blood work getting messed up, I spoke up. He said that the Free Kappa and Lambada Light chains were showing possible signs of Multiple Myeloma. One more blood test to use a compare and I got a call yesterday saying that the tests results show a 1% read. He wants to wait it out about a year and follow me then. He thinks that maybe this is showing up because of something else is wrong. Gee, don’t I get a hint of what that could be? Also, I have read if you put off treating Myeloma, it could be harder to get it. Ok, I am sending a note to my Primary and to my RA and putting them on notice. I want to know what it is that could be causing even the low reading if I don’t it? What else is wrong?? Anyone have any experience with Myeloma?
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Hi my brother was diagnosed of MM Jan 2022.He is 37. He underwent 4 cycles of chemotherapy and then a stem cell transplant. The reports 90 days post ASCT showed he is in complete remission. Now it's 6 months from transplant and although he was initially diagnosed with IgA Lambda Multiple myeloma now in the recent test the kappa figures are high it's 30 while the upper limit is 19. Can someone tell me how the kappa is increasing now. No m band seen
I don't know, but hope that he has a very experienced doctor in MM. Does he have a follow-up appoinment soon so that he can ask about it. Does he belong to a MM support group. When I was dx'd with MGUS, they told me not to worry about it, but my M spike has crept up. Now SMM. I can give you great links for MM doctors and support groups.
@carolee888 How long between your diagnosis of MGUS to smoldering myeloma, please? Most people go for many years of watchful waiting and monitoring, and many never morph into a more complicated stage.
Thank you Carole. That's very kind of you to offer me the contacts. We hail from a tiny state in India called Goa. Here in Goa we do not have access to many specialists. So from the very beginning we have been taking advice from a haematologist in Mumbai. So last Saturday we made a trip to Mumbai to clarify our doubts. The doctor told us that we do not have to be worried about the rise in Kappa as long as the kappa to lambda ratio is around 2:1. The ratio is marginally off the limits. It was a relief to hear this from the doctor. The course of treatment still remains the same. He is on lenalidomide 10mg
My brother was never put in the SMM group he was directly diagnosed as MM although they didn't want to attach a stage to it was very early. He has had no symptoms at all. It only for detected after he did CT thorax when he had covid last January. The CT revealed some lyric and sclerotic lesions on the spine. That's when all investigations started
Thank is a big relief. Here is the link to the International Multiple Myeloma.
Did he receive treatment and is in remission now?
Yes he did 4 cycles of chemotherapy from Feb 2022 to June 2022 and in August underwent autologous stem cell transplant. In November a test was done to check for Minimal residual disease and it was negative so yes he is in remission
Yes I'm connected to the international multiple myeloma org. And i do contact them for queries. They are very prompt in replying. I talk to a nurse associated with MM patients called Brittany
But knowing it's a chronic disease makes life very unsettling. For how long is it that you have been diagnosed and what is your age if you don't mind me asking?