I have a couple of questions. And I feel stupid for asking. As with any MM patient, I am keenly aware of my numbers. I anticipate my weekly blood work to see what my white blood cell, hemoglobin, creatinin and platelet counts are. I also look at other things... Phosphorus, calcium, etc. Monthly I do a 24 urine test. We looking at protein in the urine and then a Upep test tells me what percent of that protein is bad protein. I know my numbers by heart, and I try to guess what each test will show. i did blood work yesterday, and I predicted creatinin around 3.5. I'll find out Monday. i see Dr Phan every other week, when I do my maintenance chemo. This week he was thrilled with my numbers and how I'm doing. Berenson is once a month. I generally have an idea what he'll say, because I have seen my numbers before I see him. Last week, was my monthly visit with him. He was amazed with the recovery of my kidneys. The kidney doctor is once every two months. Saw him yesterday and got the go ahead to reduce my food restrictions.
There's a real powerful online myeloma community. I've met and come in contact with other patients. It's a powerful support system. It's actually one of the positives that have come from having myeloma. I'm 20 months into my journey, getting to be an old hand at this. But at times i feel uninformed and a little ignorant anout the technical aspects of the disease. This brings me to my questions.
What is m spike? With Phan or Dr B we never discuss this. How about free light chains? What am I looking for? We used to discuss my light chains, but it's not even a topic any more, so I'm not sure what I'm looking for. I've heard people say they have iGa MM. I see that number on my monthly labs. But again, I'm not sure what I am looking for. Am I iGa or iGb? I know I was stage 4 when diagnosed, the disease had signficantly progressed. But does all this even matter?
Maybe someone could help. i could ask my doctors. Dr. B will say it doesn't matter. Dr. Phan will explain, but I guess I am looking for a lay person's definition. As I said, I feel pretty atune to my numbers, my condition and what I need to do to stay healthy. As an example, today is acupuncture. No doctor prescribed it, but I am positive it is helping my kidneys recover. I spend a half hour with needles in me, as relaxed as can be, visualizing energy healing my body. Diet is key to me, which is why it's massive news that I can add nuts and beans to my diet, and get away from hormonally challenged meat products that can negatively impact my body.
Maybe understanding all these other numbers is irrelevant. I know what I need to know. But maybe I need to know more. To know or not to know, that is the question.
Matt - I am just a rookie here (1 month since DX) but my understanding is that the m spike is the ratio of the proteins created by the cells. The IG A, IG G and the IG M should produce equal amounts. In MM one goes haywire. For instance, my IG G was above 3300 at DX and my IG M was 45. Now the IG G is about 2150 and IG M is 95. The ratio is narrowing and that is good. I think the closer m spike is to 1 the better. BUT I AM JUST AN AMATEUR so take that with many grains of salt - but not too much salt.ReplyDelete
Good luck to your Vikes!
Sorry Matt - that was me, Brad, commenting above.ReplyDelete
Matt - Brad again here. This was so wrong on my part. Good thing I am a patient and not a doctor!ReplyDelete