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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If my MM comes on I will head for Mayo as soon as possible. I am very fortunate to have the head of oncology as my doctor. Reason I asked about pain is because my doctor said it can become very painful. I pray it stays we're it is.
Smart to have the Mayo plan. As for pain, I have significant osteo arthritis and cannot take any form of anti-inflammatory drugs, so hard to know what is what anyway. You learn to focus on what you CAN do.
Yes, very true. Did it take long to get into oncology at Mayo. Also one blood test takes at least 4 days. Do they have visitors housing? I live in Texas and will fly to Minnesota
Thank you for this thread! I was diagnosed with MGUS last Nov 2017, and right now my values are at 5%. I was blessed that my nephrologist saw unusual results that prompted more testing. You see, I also have a very rare kidney disease, and that has been foremost in my mind for over 3 years. At age 66, I want a lot more years to do what has been set out for me. So, I get my blood work done every 3 months, follow a good renal diet, and try to be of service everyday.
My values are 1 percent. I am stage 3 kidney disease which I have been told by one Dr that my kidneys are fine. If you were at 1 percent would you agree to wait for 1 yr to treat? Dud your values go down after treatment?
There was another test recommended by test results. Oncologist did not do extra text. I wonder why? I am 76.
And the answer is one question away, whenever you are ready to ask. Sometimes it is helpful to gather information in small doses, and connect it with what else you have learned.
Oregongirl, each person is different. My oncologist is a gem, and highly respected in her community. I trust what she tells me. I have gone through the bone marrow biopsy, CAT scan, and all the special bloodwork. One the last appt she told me she was going to try me at 6 months between appts. My kidney disease is stage 3b [in low 30s]. I watch my diet, stress levels, and have learned to forgive myself for the reduced energy levels. At this time not on dialysis. My oncologist and nephrologist work well together. I recently moved, and now I drive 100 miles each way to see them! You need to know the reason for your kidney disease; top two are high blood pressure and diabetes.
I am in the dark with the kidneys. My Primary states most Seniors have Kidney failure. I am just hanging hoping all as Drs say. Do you know what your percentage was when your Dr started treatment,? To be honest I have a DNR in my file. I have already told Dr I do not wish to do Chemo. I believe he would still be totally honest with me.
I was at 69% when the doctor first told me about it. Now I hover about 32%. Two years ago I had to retire from full time work due to lack of energy. I cannot be transplanted, as this kidney disease is my body attacking and shutting down my kidneys. So it will do it a transplant, also. I watch my weight, eat right, minimize stress, take blood pressure meds to keep that under control. A medical professional will not force you to do anything you do not want to do. My husband knows I have a DNR order on file, and understands what I want.