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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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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 20 7:37am
In reply to @caizer "He is sickle cell anemia and the doctors suggested another transplant and am confused and don't..." + (show)
@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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Hi @caizer, I just wanted to check in with you to see if you’ve learned anymore about your little boy’s condition and how’s he’s doing. Have you decided to try another transplant or have you been able to speak with his doctor about other potential options?

REPLY
sonja239 | @sonja239 | 6 days ago

I had high platelets since 2010. In 2014, I finally allowed a BMB. It is then I found out I had ET. This year, I had chest pain and found out I had CAD (runs in my family both sides) and had two arteries blocked. My platelet count was around 1300 and the cardiologist was concerned. I relocated, so I found another MPN specialist who recommended I get another BMB since it had been 10 years since my last. I now have ET post MF. I have not had symptoms and still don’t. I have to admit, maybe it would have been better not to do the BMB. It has caused serious stress. Next they want to see if my spleen is enlarged. Maybe I should cancel the appointment. Bottom line it depends on if you want to know if there is any progression or if the stress that accompanies it is worth it. I do not plan to have any more BMB as long as I am not having symptoms. I wish you the best.

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2 replies
willerta | @willerta | 6 days ago
In reply to @sonja239 "I had high platelets since 2010. In 2014, I finally allowed a BMB. It is then..." + (show)
@sonja239

I had high platelets since 2010. In 2014, I finally allowed a BMB. It is then I found out I had ET. This year, I had chest pain and found out I had CAD (runs in my family both sides) and had two arteries blocked. My platelet count was around 1300 and the cardiologist was concerned. I relocated, so I found another MPN specialist who recommended I get another BMB since it had been 10 years since my last. I now have ET post MF. I have not had symptoms and still don’t. I have to admit, maybe it would have been better not to do the BMB. It has caused serious stress. Next they want to see if my spleen is enlarged. Maybe I should cancel the appointment. Bottom line it depends on if you want to know if there is any progression or if the stress that accompanies it is worth it. I do not plan to have any more BMB as long as I am not having symptoms. I wish you the best.

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Thanks for your reply.

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Mentor
Lori, Volunteer Mentor | @loribmt | 6 days ago
In reply to @sonja239 "I had high platelets since 2010. In 2014, I finally allowed a BMB. It is then..." + (show)
@sonja239

I had high platelets since 2010. In 2014, I finally allowed a BMB. It is then I found out I had ET. This year, I had chest pain and found out I had CAD (runs in my family both sides) and had two arteries blocked. My platelet count was around 1300 and the cardiologist was concerned. I relocated, so I found another MPN specialist who recommended I get another BMB since it had been 10 years since my last. I now have ET post MF. I have not had symptoms and still don’t. I have to admit, maybe it would have been better not to do the BMB. It has caused serious stress. Next they want to see if my spleen is enlarged. Maybe I should cancel the appointment. Bottom line it depends on if you want to know if there is any progression or if the stress that accompanies it is worth it. I do not plan to have any more BMB as long as I am not having symptoms. I wish you the best.

Jump to this post

Hi @sonja239. I understand your duress with having received news that you have two myeloproliferative blood disorders. No one likes to hear there is a potential for changes in their body that may require medical intervention.
It’s especially challenging to accept news like this when you’re not having symptoms.
I don’t want to add to your stress, but having gone through a blood cancer event myself I want to make sure you remain healthy. To do that is to recognize that there may be changes taking place and accept the diagnosis and assistance of your doctor. Ignoring the diagnosis won’t make it go away.

It is entirely possible to have a Myeloproliferative disorder such as ET and MF without having noticeable symptoms. You’ve been fortunate thus far because a seriously high platelet level can lead to dangerous or deadly blood clotting situations. Considering that CAD runs in your family this may increase the danger. It’s important to have a MPN specialist diagnosis and type your particular disease for risk assessment so you can be treated properly. There can also be genetic mutations such as JAK2 or CALR which can bring on the changes occurring in the marrow.

Knowledge is power so I’m going to load you up with a few articles to read to familiarize yourself with what may be happening.
This is a good article explaining ET.
https://www.healthline.com/health/primary-thrombocythemia

You mentioned MF…myelofibrosis. This, along with your ET, could be showing a potential of further proliferation of your blood condition. Myelofibrosis is a bone marrow cancer affecting blood cell production. It causes abnormal development and function of bone marrow cells, leading to scar tissues that affects your bone marrow and can interfere with the production of healthy blood cells.
A little more information on MF
This from Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057
~~
This article is from Verywellhealth.com
https://www.verywellhealth.com/myelofibrosis-7562192

As much as you didn’t like it, the bone marrow biopsy and aspiration was a valuable tool for your hematologist oncologist. That series of tests can reveal the overall health of your bone marrow. That is the heart of the blood manufacturing site of the body. If there is something amiss with the marrow, it may interfere with healthy blood cell production and your overall health. An enlarged spleen can be a side effect of myelofibrosis. So that’s why your oncologist is requesting the ultrasound for your spleen.

For your continued good health, I’m encouraging you not to cancel the appointment to check your spleen or to dismiss what your doctor is telling you. Again, ignoring the diagnosis won’t make it go away. But it will allow you to get on top of the underlying potential for illness.

We have many members in the forum who have ET and or MF. If you’d like, I’d be happy to post some links to helpful discussions so you can talk to others who have a similar diagnosis.
I hope that you’ll continue to followup with your doctor. Will you let me know please what you find out from your next test?

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