1. < Blood Cancers & Disorders

Why is a new bone marrow biopsy necessary?

Posted by willerta @willerta, Jun 12 3:16pm

I’ve had ET caused by Jake 2 gene mutation for 10 years and have been taking standard dose hydra 500mg a day. I’m now 71 and have a new hematologist who wants a new biopsy with an ekg. There are no indicators from my last blood work that this is necessary other than my platelet count was 456 rather than the 400-425 desirable range. When I asked is this necessary her answer was it’s good to know how my bone marrow condition is. I get the feeling this is being done because insurance is paying. Any thoughts?

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fortunateoldguy | @fortunateoldguy | Jun 12 3:42pm

While bone marrow biopsies aren’t often repeated, an updated one may be justified if your last one is 10 years old. A new one could pick up changes such as newly formed neoplasms or myeloproliferative disorders that you didn’t have previously. You might be glad you did.

If it were me, I would have a new one done as I want to keep ahead of the game.

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1 reply
katgob | @katgob | Jun 12 7:23pm

I agree with fortunaeoldguy, as I was reminded that my bone marrow is the key to what was going on with my blood. For me it led to MDS, yet it may be something that is easier to treat.

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nypara66 | @nypara66 | Jun 13 6:30am

I would think twice. Ask them what changes are they looking for and would there be a change in treatment if they found something? If treatment is the same I personally wouldn’t do it. It’s your body and what ever you feel comfortable with you should do. Their “Protocol” for after ten years doesn’t necessarily mean you need to follow it if you aren’t experiencing any new symptoms. You platelets are not enough to validate that. Good luck!

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3 replies
Mentor
Patty, Volunteer Mentor | @pmm | Jun 13 6:50am

@willerta
Greetings!
I’m glad you are asking questions and making decisions about your treatment based on what is good for you. BMB is an invasive procedure and is not without risk. If you need one, you need one, but I would ask all the questions.
What information are you seeking? Will a change in values change the trajectory of your treatment plan? What information can be gleaned from a BMB that can’t be construed from blood analysis?
Why now? Has anything changed that warrants further analysis?
These procedures should engender discussion.
Will you let me know what you decide?

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2 replies
nohrt4me | @nohrt4me | Jun 13 7:07am
In reply to @nypara66 "I would think twice. Ask them what changes are they looking for and would there be..." + (show)
@nypara66

I would think twice. Ask them what changes are they looking for and would there be a change in treatment if they found something? If treatment is the same I personally wouldn’t do it. It’s your body and what ever you feel comfortable with you should do. Their “Protocol” for after ten years doesn’t necessarily mean you need to follow it if you aren’t experiencing any new symptoms. You platelets are not enough to validate that. Good luck!

Jump to this post

Really good question: What are you looking for and how will it change my treatment for the better? I'm 70 and starting to ask a lot more of those questions.

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willerta | @willerta | Jun 13 9:31am
In reply to @fortunateoldguy "While bone marrow biopsies aren’t often repeated, an updated one may be justified if your last..." + (show)
@fortunateoldguy

While bone marrow biopsies aren’t often repeated, an updated one may be justified if your last one is 10 years old. A new one could pick up changes such as newly formed neoplasms or myeloproliferative disorders that you didn’t have previously. You might be glad you did.

If it were me, I would have a new one done as I want to keep ahead of the game.

Jump to this post

Thanks for your sound advice.

REPLY
willerta | @willerta | Jun 13 9:32am
In reply to @nypara66 "I would think twice. Ask them what changes are they looking for and would there be..." + (show)
@nypara66

I would think twice. Ask them what changes are they looking for and would there be a change in treatment if they found something? If treatment is the same I personally wouldn’t do it. It’s your body and what ever you feel comfortable with you should do. Their “Protocol” for after ten years doesn’t necessarily mean you need to follow it if you aren’t experiencing any new symptoms. You platelets are not enough to validate that. Good luck!

Jump to this post

Thanks for your advice.

REPLY
willerta | @willerta | Jun 13 9:36am
In reply to @pmm "@willerta Greetings! I’m glad you are asking questions and making decisions about your treatment based on..." + (show)
@pmm

@willerta
Greetings!
I’m glad you are asking questions and making decisions about your treatment based on what is good for you. BMB is an invasive procedure and is not without risk. If you need one, you need one, but I would ask all the questions.
What information are you seeking? Will a change in values change the trajectory of your treatment plan? What information can be gleaned from a BMB that can’t be construed from blood analysis?
Why now? Has anything changed that warrants further analysis?
These procedures should engender discussion.
Will you let me know what you decide?

Jump to this post

This is really good advice. I’ll most likely get it done to make sure there’s nothing else happening in my bone marrow as a precaution.

REPLY
cindy7 | @cindy7 | Jun 13 11:44am

Everyone has already provided excellent insight regarding your question. Weigh the risks and benefits! Always ask your provider questions to generate good discussions about your health care plan.
Since you are asking for personal opinions, I will offer mine. As long as my platelet counts remained stable and symptoms have not changed, I would choose to ride it out a little longer before undergoing a biopsy. That’s my comfort level in living with this condition.

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2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 13 12:40pm
In reply to @cindy7 "Everyone has already provided excellent insight regarding your question. Weigh the risks and benefits! Always ask..." + (show)
@cindy7

Everyone has already provided excellent insight regarding your question. Weigh the risks and benefits! Always ask your provider questions to generate good discussions about your health care plan.
Since you are asking for personal opinions, I will offer mine. As long as my platelet counts remained stable and symptoms have not changed, I would choose to ride it out a little longer before undergoing a biopsy. That’s my comfort level in living with this condition.

Jump to this post

Hi @cindy, Welcome to Connect. It sounds like you have experience with ET. We have several lively and active discussions with other members who also have ET. If you haven’t already, here are a few conversations you might want to peruse and introduce yourself.
The first link below was started in 2011 but remains current. You can switch the order of the conversations to the most recent.

~Essential Thrombocythemia
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-26a26f/
~Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
How long ago were you diagnosed? Are you taking any medications to keep your platelet count stable?

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