What is doc looking for with a Bone Marrow Biopsy?

I won’t lie, mine hurt bad. They couldn’t numb me so I laid on my side and he had a huge needle he hammered into my hip bone. He was needing fluid to test for leukemia. My platelets were 1.2 million. They are still high. Anyway he apologized said he had to do it again he didn’t get any. I said I will come back he said no you won’t so we did it again. I won’t again. He ends up telling me it is ET and take an aspirin a day and after I go through menopause come back. It’s been 19 years. I have busting headaches everyday. I didn’t do hormones during menopause. I just did what my Mom and Grandma did. Suffered through it. I’m starting to have issues with circulation, lost 40 pounds, tired, my neck veins are bulging but it could be from the weight loss. When I first found out my platelets were high my Dr sent me to a cancer place in Memphis. These ladies all were so sick I was embarrassed for even being there. I heard the Dr laughing outside my door when she looked at my chart. Just make sure you take a friend or family member to have a hand to squeeze. You will be ok. By the way, you don’t happen to have RH Neg blood factor do you?

They didn’t offer me nothing and all he said was we can’t numb your bones nothing at all. And I had to do it twice. If you have ever had children just keep telling yourself I can do this. I had my first child naturally I couldn’t with my second birth. They were twins. You got this.

Good morning, @katgob, it’s great you’re participating in a study. I was in several myself. It’s our way of being able to assist in the forward growth of cancer treatments.

Graft vs Host Disease or GVHD is a side effect of a bone marrow transplant. To help you understand what that is a little clearer, when a person has a solid organ transplant, they will be on immunosuppressants (anti-rejection drugs) for the rest of their life so that their immune system doesn’t reject the organ.
When we a bone marrow transplant, we’re getting someone else’s immune system (the graft) and it wants to reject our body (the host). It looks as our body as an invading organism and wants to do what any healthy immune system does…take out the offender! Eventually, we are able to get off immunosuppressants as our new immune system learns to recognize the foreign proteins in our body. But in the meantime, it can create some issues and the new graft needs to be suppressed or held back from being hyper active for a while.
That’s where the Itacitinib comes into play. It is an immunosuppressant used for mild GVHD. This will be a really good trial for you to be involved in.

I strongly suggest not reading too much information about the drugs you’ll be taking. I know knowledge is power but in this case, reading about these meds can put fear in you that isn’t warranted.

As for donating blood in the future. That you’ll have to check with your doctor. My transplant doctor told me that is off the table for me. I cannot donate blood or blood products.

@katgob, we should move our conversations out of this discussion about bone marrow biopsies, over to this discussion about Bone Marrow Transplant stories. I’m going to copy and past this reply over there so we can keep it in the right place.

See you over here! https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

I had a bone marrow test when I was 14 and it was no big deal for me. I am assuming it was a biopsy as leukemia was suspected. That was negative but I do have a form of leukemia today. Mine was done only with a local (I was told red soap) and was on the front iliac crest. The problem was that I had been given a large shot of penicillin in the back of that hip the day before so the downward pressure on that caused major discomfort. The biopsy itself did not hurt. Maybe I had a very skilled doctor. Or I did not know what was going on so did not anticipate any pain.

Can you tell me if doctors treat nodules you have? I have nodules in thyroid and lesions in my lungs. Doctors dismiss lesions and test nodules for cancer every 6 months but are unable to do anymore because of transportation my issues. Thank you, Pam

Pam,
I have not been treated yet. My transplant Dr did not note them as a problem. I think his focus is my transplant. I will send the question to my new medical oncologist.
I know if we do not ask or advocate for services, they may not happen on a timely basis.

What does 'not too bad' mean? I'm having one on the 15th.

I had a bone marrow biopsy in April 2021. After my blood platelets remained high, over 800 M, and some side pain, my hematologist did a variety of tests, such as CatScan, ultrasound, colonoscopy, more bloodwork, and finally the bone marrow biopsy. My side pain went away (probably muscle pain/coastal chondritis), and the bone marrow biopsy is what diagnosed my platelet problem. Age 69, I had developed a gene mutation and disease known as Essential Thrombocytosis. The bone marrow biopsy was not fun, but the doctor numbed the area above the hip on the back and took out some bone marrow by needle. He did it right the first time. It's painful and you need to have someone drive you home because of the drug. And I was exhausted when I got home. But that was the key to finding out what to do. Now I take hydroxy urea and my blood platelets are normal. I'd rather do this than find out suddenly by having a stroke or other clot problem because of the high platelet count that I had.

Thanks for the reply. Still waiting on scheduling for my Bone Marrow Biopsy. In the meantime, doctor has asked for updated CBC, CMP and PTT. All seem to be normal and platelet count was down to 440. Do you think he will still go ahead with BMB? Looking back on blood work from the last ten years my platelets have hovered between 430 and 580. Other than that, no symptoms. I am 66 and only with my latest physical did doctor suggest seeing a hematologist/oncologist. He went right to biopsy. A
pparently I also test negative for all mutations.
Also, my platelet count appears to respond to Mediterranean diet. Low when I stick to it, higher when I don't.
Has anyone else found this or am I grasping at straws???

Back to your initial question. I would ask the doctor why he or she wants the BMB. It is your right to be informed and not to just blindly do as told.