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should I do more testing?

Blood Cancers & Disorders | Last Active: Jul 28 8:24am | Replies (25)

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@pmm

@veronica1955
Greetings! I’m going to offer some different reasoning. Each of us has to make our own informed decisions about our healthcare. So you may very well take another path, and that’s okay too.
I was diagnosed with MGUS three years ago. At the time I discussed getting a BMB with my doctor. As a prelude to my diagnosis, I had already had extensive blood work, scans of my whole body and urinalysis.
I asked if it was my hem/onc doc’s opinion, given this information, that I needed to start any treatment. He said “no.”
I asked if my “numbers” increased, at what point they would reach a level that he would start to consider treatment. He said that they would be substantially higher.
I asked if he was concerned that my blood disorder was more complex than MGUS and he said, “no.”
So we agreed that the BMB could wait. My numbers rose a bit but my last bloodwork yielded almost identical results to the first blood draws when I was diagnosed three years ago.
It is worth a discussion with your hem/onc physician. I am perfectly comfortable that I made the right decision and I do follow up with my doctor at the prescribed intervals to make sure that things aren’t getting “wanky.”
They tell me, these medical people, that my threshold for pain is pretty high, but if I were going to get a bone marrow biopsy, I can assure you that I would ask for sedation. I am in awe of my fellow patients and Mayo connect members who do it without sedation and some even talk about doing it without any numbing but no. I am not that brave.
I am an advocate for cooperating with doctors, but I’m also an advocate for asking lots of questions. There is no invasive medical procedure that is without risk. You need to ask all the questions and have a firm understanding of why a procedure is necessary before you agree to it. If there’s a good reason, by all means, make yourself as comfortable as possible, through your negotiation with your Physician, but do what you need to do.
Will you let me know what you decide?

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Replies to "@veronica1955 Greetings! I’m going to offer some different reasoning. Each of us has to make our..."

Thank you, If you don't mind me asking were your number about the same as mine?

What were your numbers on light chains and such. Mine have remained pretty much the same. At times I think maybe the BMB would be good because then I would know,