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Why is a new bone marrow biopsy necessary?

Posted by willerta @willerta, Jun 12, 2024

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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jackiecarey | @jackiecarey | Jun 13, 2024
In reply to @nypara66 "I would think twice. Ask them what changes are they looking for and would there be..." + (show)
Profile picture for nypara66 @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!

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Overall I agree the only caveat is you mentioned it's a new hematologist, is it a new institution, too? Often a change in institutions could make a difference...

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willerta | @willerta | Jun 13, 2024
In reply to @cindy7 "Everyone has already provided excellent insight regarding your question. Weigh the risks and benefits! Always ask..." + (show)
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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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Thanks. Much appreciated.

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caizer | @caizer | Jun 14, 2024

I have a three years old son who has a graft failure last year, and the doctors said a second transplant will be successful should I go ahead for the second transplant? I need your suggestion. Thank you

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Lori, Volunteer Mentor | @loribmt | Jun 14, 2024
In reply to @caizer "I have a three years old son who has a graft failure last year, and the..." + (show)
Profile picture for caizer @caizer

I have a three years old son who has a graft failure last year, and the doctors said a second transplant will be successful should I go ahead for the second transplant? I need your suggestion. Thank you

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Hello @caizer. This graft failure for your little son has to leave you feeling like a deflated balloon. He’s been through (and you too!) so much already and the thought of having another stem cell transplant for him is a huge decision.

What was the condition that required him to have a transplant, if you don’t mind sharing. What are his doctors recommending, another Allogeneic transplant or an auto transplant, using his own cells?

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caizer | @caizer | Jun 14, 2024
In reply to @loribmt "Hello @caizer. This graft failure for your little son has to leave you feeling like a..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hello @caizer. This graft failure for your little son has to leave you feeling like a deflated balloon. He’s been through (and you too!) so much already and the thought of having another stem cell transplant for him is a huge decision.

What was the condition that required him to have a transplant, if you don’t mind sharing. What are his doctors recommending, another Allogeneic transplant or an auto transplant, using his own cells?

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He is sickle cell anemia and the doctors suggested another transplant and
am confused and don't know what to do.

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thomhorowitz | @thomhorowitz | Jun 14, 2024

Bone marrow biopsy was a tool used during the inquisition. Sedation is in order unless you plan to convert

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SJJS | @sjjs | Jun 14, 2024
In reply to @pmm "@willerta Greetings! I’m glad you are asking questions and making decisions about your treatment based on..." + (show)
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@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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Thank you everyone. I have CCUS or MDS. I am not entirely sure, but we are leaning toward CCUS.
I understand mutations and thought that a BMB (mine was two years ago) might shed some new light. One doctor suggested having one every few years. I assume you can have new mutations that may be addressed even if you are not symptomatic so that things might not get worse. I am not fond of hindsight, and my Mama always said, "Nip it in the bud." Any thoughts greatly appreciated?

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Lori, Volunteer Mentor | @loribmt | Jun 14, 2024
In reply to @caizer "He is sickle cell anemia and the doctors suggested another transplant and am confused and don't..." + (show)
Profile picture for caizer @caizer

He is sickle cell anemia and the doctors suggested another transplant and
am confused and don't know what to do.

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This has to be a very difficult decision for you on whether to try again with the transplant or not for your little boy. I know personally how challenging it is to have a bone marrow transplant and can’t imagine trying to explain all of this to a child of three.

There are significant advances taking place in gene therapy which may offer other options in the future, but right now, a bone marrow/stem cell transplant remains the only potential cure for sickle cell anemia.

Did his doctor feel the donor cells didn’t engraft or was there a rejection of the cells? How did your little boy do the first time?

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Lori, Volunteer Mentor | @loribmt | Jun 14, 2024
In reply to @thomhorowitz "Bone marrow biopsy was a tool used during the inquisition. Sedation is in order unless you..." + (show)
Profile picture for thomhorowitz @thomhorowitz

Bone marrow biopsy was a tool used during the inquisition. Sedation is in order unless you plan to convert

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Tom!! I wish there were a laugh emoji because your comment had me, literally, laughing out loud!! I’ve had 13 bmbs and they failed to break or convert me! 😂

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Patty, Volunteer Mentor | @pmm | Jun 15, 2024
In reply to @loribmt "Tom!! I wish there were a laugh emoji because your comment had me, literally, laughing out..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Tom!! I wish there were a laugh emoji because your comment had me, literally, laughing out loud!! I’ve had 13 bmbs and they failed to break or convert me! 😂

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Me too @loribmt
And I agree, @thomhorowitz !

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