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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jackiecarey | @jackiecarey | Jun 13 4:06pm

In reply to @nypara66 "I would think twice. Ask them what changes are they looking for and would there be..." + (show)

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...

willerta | @willerta | Jun 13 5:39pm

In reply to @cindy7 "Everyone has already provided excellent insight regarding your question. Weigh the risks and benefits! Always ask..." + (show)

Thanks. Much appreciated.

caizer | @caizer | Jun 14 5:31am

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

Lori, Volunteer Mentor | @loribmt | Jun 14 9:42am

In reply to @caizer "I have a three years old son who has a graft failure last year, and the..." + (show)

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?

caizer | @caizer | Jun 14 11:08am

In reply to @loribmt "Hello @caizer. This graft failure for your little son has to leave you feeling like a..." + (show)

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

thomhorowitz | @thomhorowitz | Jun 14 1:21pm

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

SJJS | @sjjs | Jun 14 2:16pm

In reply to @pmm "@willerta Greetings! I’m glad you are asking questions and making decisions about your treatment based on..." + (show)

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?

Lori, Volunteer Mentor | @loribmt | Jun 14 2:26pm

In reply to @caizer "He is sickle cell anemia and the doctors suggested another transplant and am confused and don't..." + (show)

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?

Lori, Volunteer Mentor | @loribmt | Jun 14 2:28pm

In reply to @thomhorowitz "Bone marrow biopsy was a tool used during the inquisition. Sedation is in order unless you..." + (show)

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! 😂

Patty, Volunteer Mentor | @pmm | Jun 15 8:21am

In reply to @loribmt "Tom!! I wish there were a laugh emoji because your comment had me, literally, laughing out..." + (show)

Me too @loribmt
And I agree, @thomhorowitz !

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