should I do more testing?

Posted by veronica1955 @veronica1955, Jul 19 11:40am

I have had high light chains 39.9 for 4 or five years, Also high ratio 1.93and high Immunoglobulin A
597 mg/dL . It was suggested I have a bone marrow test two or three years ago. Everything seems to stay at the numbers above, How horrible is a bone marrow test and should I do it to get answers?

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

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@kayabbott

I had a baseline BMB 8 years ago and found it quite interesting. I am a woodworker and I used to be an exploration geologist, so experienced with drilling through wood and rock of different densities. There was no BMB pain, just pressure and drilling differences from the fat, muscle, and bone penetrated. It felt quite earthy. My numbers have been ramping up, so I expect I'll have another in the next year or two.

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Thank you ! Were your numbers higher than mine?

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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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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,

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@veronica1955

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,

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My current kappa is 283 and kappa/lambda is 19.3; they have been ramping up from 29 and 2.3 for the last 5 years. My BMB 8 years ago was for baseline, and just showed early stage deranged cells. A scientific paper I read called them deranged, rather than precancerous, a somewhat softer term. My oncologist indicated another BMB once the ratio hits around 60; I see him Friday, so we shall see.

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I would much rather have a bmb than go to the dentist, even if it was just for a cleaning. There was no pain, some pressure that was like a toddler stepping on your hip. I don’t think the whole process took more than 20-30 minutes.

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I wanted to add that after my 1st BMB i was diagnosed with MDS. They were checking for blasts and other things that happen in your marrow with this MDS syndrome. I agree with the others. What are your blood numbers and what does your doctor suggest. What is right for you?

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@kayabbott

My current kappa is 283 and kappa/lambda is 19.3; they have been ramping up from 29 and 2.3 for the last 5 years. My BMB 8 years ago was for baseline, and just showed early stage deranged cells. A scientific paper I read called them deranged, rather than precancerous, a somewhat softer term. My oncologist indicated another BMB once the ratio hits around 60; I see him Friday, so we shall see.

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Thank you, My numbers are no where that high. Prayers for healing!

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@veronica1955

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,

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@veronica1955
My numbers are a bit higher than yours. Kappa 88.8, Lambda 19.8, k/l 4.49.
The figures have barely moved since I was diagnosed. They have creeped up a tiny bit, but it’s nothing that I worry about.

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@kayabbott

My current kappa is 283 and kappa/lambda is 19.3; they have been ramping up from 29 and 2.3 for the last 5 years. My BMB 8 years ago was for baseline, and just showed early stage deranged cells. A scientific paper I read called them deranged, rather than precancerous, a somewhat softer term. My oncologist indicated another BMB once the ratio hits around 60; I see him Friday, so we shall see.

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@kayabbott
I really like that “deranged“ label! I’ll be thinking about you on Friday and hoping for numbers stability. Will let me know how it goes?

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