Bone marrow biopsy and/or blood tests for MGUS

Posted by Patty, Volunteer Mentor @pmm, May 10, 2023

Somebody was talking about some new blood test that would eliminate the need for bone marrow biopsy to definitively dx MGUS. I think this is interesting. Any of you bypassing the BMB in favor of these blood tests?

https://www.targetedonc.com/view/new-blood-tests-reduce-need-for-bone-marrow-biopsy-in-multiple-myeloma

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Profile picture for barbarian1 @barbarian1

@dcuste what's ur IgM result? Mines 4,655 w kappa Lt chn ratio rising to 2.39. HS no spleen, no symptoms other than peeing more. Male Age 70.
Don't want BMT.

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@barbarian1 Last week my IgM results dropped to 2100. Kappa Lt chn ratio has always been normal for me. I've been peeing alot also and it has been bubbly pee. Since I wrote that comment, my BMB showed 20% infiltration and my diagnosis was changed from IgM MGUS to Smoldering WM Wild Type (MYD88 & CXCR4 not mutated). RBC, HGB, & HCT are all low. I'm having more labs to determine if there is any way to stop this anemia from becoming serious. I see Hem/Onc next week.

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Profile picture for barbarian1 @barbarian1

@newfiesgirl1 I'm dealing w all this for 1st time too w HS no spleen reason for H/O ref to hospitals Hematologist. My LabCorp results kappa Lt chn ratio increasing, now 2.39 w IgM 4,566. Hem concnd wants bmt but I'm scared to have done in that might be corrupt results like my Mom's who died from treatment of unknown cancer.

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@barbarian1 After reading through a couple of your comments I was a little confused about your needing a BMT…and wanted to clarify things for you. I see references to having a BMT, which is a bone marrow transplant. I think you’re referring to a bone marrow biopsy which is usually listed as a BMB or BMBX (bone marrow biopsy and exam).
If your doctor is recommending the biopsy, it is a relatively simple procedure but it can be a little uncomfortable for a few moments. Depending on where you’re able to have the procedure done, some facilities can offer a light sedation, such as people have for a colonoscopy. If that’s not available, the doctor or NP will still be using anesthetic to numb the site where the biopsy will be taken. That is in the lower back (either side) right near the dimple on your bum. I’ve had 13 of these done and the anxiety leading up to the procedure is far worse than actually having it done.

I’m sorry that your mom passed away from a treatment for unknown cancer, but this should have nothing to do with your having a BMBX. These are safe, routine procedures that doctors use to be able to get to the heart of the blood manufacturing site…and that’s in the marrow. The results can give your doctor an overall picture of the health of your marrow and its ability to produce healthy blood cells. This is nothing to fear. It’s an important ‘tool’ for you and your doctor to find the correct diagnosis and possible treatment if needed to keep you healthy.

Will you consider having this done?

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Profile picture for dcuste @dcuste

@barbarian1 Last week my IgM results dropped to 2100. Kappa Lt chn ratio has always been normal for me. I've been peeing alot also and it has been bubbly pee. Since I wrote that comment, my BMB showed 20% infiltration and my diagnosis was changed from IgM MGUS to Smoldering WM Wild Type (MYD88 & CXCR4 not mutated). RBC, HGB, & HCT are all low. I'm having more labs to determine if there is any way to stop this anemia from becoming serious. I see Hem/Onc next week.

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@dcuste I read regular bubbly foamy pee is sign of kidney disease but I'm no expert

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Profile picture for Lori, Volunteer Mentor @loribmt

@barbarian1 After reading through a couple of your comments I was a little confused about your needing a BMT…and wanted to clarify things for you. I see references to having a BMT, which is a bone marrow transplant. I think you’re referring to a bone marrow biopsy which is usually listed as a BMB or BMBX (bone marrow biopsy and exam).
If your doctor is recommending the biopsy, it is a relatively simple procedure but it can be a little uncomfortable for a few moments. Depending on where you’re able to have the procedure done, some facilities can offer a light sedation, such as people have for a colonoscopy. If that’s not available, the doctor or NP will still be using anesthetic to numb the site where the biopsy will be taken. That is in the lower back (either side) right near the dimple on your bum. I’ve had 13 of these done and the anxiety leading up to the procedure is far worse than actually having it done.

I’m sorry that your mom passed away from a treatment for unknown cancer, but this should have nothing to do with your having a BMBX. These are safe, routine procedures that doctors use to be able to get to the heart of the blood manufacturing site…and that’s in the marrow. The results can give your doctor an overall picture of the health of your marrow and its ability to produce healthy blood cells. This is nothing to fear. It’s an important ‘tool’ for you and your doctor to find the correct diagnosis and possible treatment if needed to keep you healthy.

Will you consider having this done?

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@loribmt my abbrev bmt is bone marrow test, not transplant. Ty for correcting. I had cortisone shot under live X-ray in 04 for my ruptured L4 L5 back discs that was too traumatic for me so I'm worried bout this intrusive test too. U say they can put me out too (not just pain shot) as option?

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Profile picture for dcuste @dcuste

@barbarian1 Last week my IgM results dropped to 2100. Kappa Lt chn ratio has always been normal for me. I've been peeing alot also and it has been bubbly pee. Since I wrote that comment, my BMB showed 20% infiltration and my diagnosis was changed from IgM MGUS to Smoldering WM Wild Type (MYD88 & CXCR4 not mutated). RBC, HGB, & HCT are all low. I'm having more labs to determine if there is any way to stop this anemia from becoming serious. I see Hem/Onc next week.

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@dcuste also all my blood tests results I Google searched point to Waldenström macroglobulinemia (WM) — 😱also known as lymphoplasmacytic lymphoma

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Profile picture for Lori, Volunteer Mentor @loribmt

@barbarian1 After reading through a couple of your comments I was a little confused about your needing a BMT…and wanted to clarify things for you. I see references to having a BMT, which is a bone marrow transplant. I think you’re referring to a bone marrow biopsy which is usually listed as a BMB or BMBX (bone marrow biopsy and exam).
If your doctor is recommending the biopsy, it is a relatively simple procedure but it can be a little uncomfortable for a few moments. Depending on where you’re able to have the procedure done, some facilities can offer a light sedation, such as people have for a colonoscopy. If that’s not available, the doctor or NP will still be using anesthetic to numb the site where the biopsy will be taken. That is in the lower back (either side) right near the dimple on your bum. I’ve had 13 of these done and the anxiety leading up to the procedure is far worse than actually having it done.

I’m sorry that your mom passed away from a treatment for unknown cancer, but this should have nothing to do with your having a BMBX. These are safe, routine procedures that doctors use to be able to get to the heart of the blood manufacturing site…and that’s in the marrow. The results can give your doctor an overall picture of the health of your marrow and its ability to produce healthy blood cells. This is nothing to fear. It’s an important ‘tool’ for you and your doctor to find the correct diagnosis and possible treatment if needed to keep you healthy.

Will you consider having this done?

Jump to this post

@loribmt also in googling my blood test results showed probability dx of either Waldenström macroglobulinemia (WM) — also known as lymphoplasmacytic lymphoma or MGUS😱 😿

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Profile picture for barbarian1 @barbarian1

@loribmt my abbrev bmt is bone marrow test, not transplant. Ty for correcting. I had cortisone shot under live X-ray in 04 for my ruptured L4 L5 back discs that was too traumatic for me so I'm worried bout this intrusive test too. U say they can put me out too (not just pain shot) as option?

Jump to this post

@barbarian1 Many hospitals or outpatient facilities have the option for light sedation for patients having a bone marrow biopsy. Let your doctor know about your concerns and see if sedation is available for your test. Having had biopsies both ways, quite honestly I prefer the light sedation route myself.
If sedation isn’t an option, ask your doctor for one-time anti-anxiety med like lorazapam (Ativan). That can really take the edge off and help to be more relaxed during the procedure.
But please don’t live in fear of having this test done. It can be very helpful to get the correct diagnosis for you and as I mentioned, the anticipation is generally worse than the procedure. Let me know how it goes, ok?

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I echo what Lori said. I haven't had thirteen BMBs (13? Damn!), but I have had three in the last 18 months, all without sedation, just a local. None were a big deal, and the results can be critical both to diagnosis and the decision whether or not to treat. If your doctor recommends it, you should have it. Discuss your concerns with the doctor - guaranteed it will not be the first time s/he has heard them.

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Profile picture for barbarian1 @barbarian1

@loribmt also in googling my blood test results showed probability dx of either Waldenström macroglobulinemia (WM) — also known as lymphoplasmacytic lymphoma or MGUS😱 😿

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@barbarian1 So, my suggestion to you, as a veteran/survivor of a blood cancer journey, is stop looking to google or ChatGPT for answers. Please have the proper tests done, wait for the results and then sit down with your doctor. Because trying self diagnosis by interpreting results yourself can leave you with a huge case of anxiety, as you’re already finding out. Let me know what you find out please. ☺️

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@barbarian1 yes! What Lori said. And I would add that it’s important to advocate for yourself. If you want sedation… Light sedation, you should be able to get that unless you’re having this procedure done in a place where they don’t provide it and if that’s the case asked to be referred to someplace at which this is routine. It’s like with a colonoscopy. You want to go to someone who does 20 colonoscopies a week rather than 20 colonoscopies a year, right?

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