What was your experience with bone marrow biopsy?
The hematologist/oncologist I saw yesterday talked to me about having a bone marrow test done. I have heard that it is very painful and no anesthetic is given. Can anyone tell me about your experience having it done?
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I had bone marrow byopsie over a year ago when I was having IvIg for multiple autoimmune conditions. When my platelettes whent low I thought I was having a drug reaction. Nevermind, that my monocytes had been high for ages but my primary never mentioned them. Anyway, sent for BMB right away which I had with lidocane local. I did not feel pain, just pressure. You were arranged so that there was the wall to push against, which I did. I had two mutations, one was neutral and one associated with poorer outcomes. Oncologist is managing it as we go.
I had my 4th BMB done today. I requested the same PA- She ROCKS! 1% lidocaine localized and i almost did not feel any pressure. Nearly painless!!! She showed me the stain slide being sent to the blood lab for review. The Chimerism results do not come back usually for2 weeks. I asked if she got enough product, and she said yes as she showed me the tubes.
kayabbott- Looks like your BMB was a fairly good experience too.
The bone marrow biopsy is the truth teller. I hope whatever is found that it has a treatment that is manageable. Your post had me lookup what both results are that you shared. I had the BRCA2 mutation, breast cancer, a TP 53cell mutation and MDS! I had low platelets, white cells and red. The plasma and MM i know are scary. Take care of yourself. The best thing you did was go to the doctor.
@kayabbott
I’m sorry to hear that. Will they start you on a treatment regimen or are they still going to watch and wait?
If it is SMM then likely waiting to see if it morphs to MM. I don't have the DNA results yet. If I have AL amyloidosis then it will be treated like MM. I had the fat pad biopsy yesterday, which is sort of like liposuction for people that only want a small glob removed (looked like whiter chicken fat). My oncology dr doesn't think I have kappa AL amyloidosis, but my GI doc does (I suspect my GI is right). I read some good books, "A lucky life interrupted" by Tom Brokaw on his MM diagnosis in 2013 and how he deals with it, and "Breath from salt" by Trivedi on the history and treatment of cystic fibrosis (including where Congo Red and other marker dyes came from). Having to remake oneself is better than being unmade.
@kayabbott
“ Having to remake oneself is better than being unmade.”
You are so wise.
Hugs. Let me know how it goes. Hoping for an easy “remaking.”
I just had a bone marrow biopsy done three days ago with only an anti anxiety medication given, a small dose I requested to take the edge off. My doctor was very quick and numbed me up very well, explained everything as he was preforming the procedure and let me know when the moments would be when I would feel more pressure and some pain. Not sure if being a retired Oncology nurse, who has been around this before made it better or worse. I was glad I had the Lorazepam on board prior for sure. It wasn't as bad as I thought it would be. I am definitely emotionally fragile at this point as I have just gotten diagnosed. My advise is advocate for yourself because you know what you need. There is no reason to suffer emotionally or physically. In my case I was more worried about my emotional reaction as I am prone to anxiety. If this biopsy didn't go as well as it did I would request sedation for the next one or if I felt I just couldn't handle it at that time given my status.
@tamara3
That is definitely good counsel. Patients should ask for what they need and not tolerate being made to feel awkward if they feel that they want sedation.
I’m glad it went well for you. When will you be able to go over the results with your doc?
My husband has had three bone marrow biopsies in the last year. We insist on sedation, as he had two done years ago with only local anesthetic and it was much too painful. Never again.
I have an appointment in a little over a week. I have already been diagnosed with ET with JAK2 V617F mutation. I am negative for BCR ABL1. My hematologist has started me on Aspirin and wants to start me on Hydroxyurea. I asked to wait to start it for a few weeks until I started the Aspirin as I suffer from GERD already. So this may make things more difficult as I have not been able to tolerate Aspirin in the past.
I am relieved to find this web page as I was feeling very alone in my diagnosis.
Hi @tamara, I want to add my welcome along with @pmm. I’m so glad you found us too. Connect is a wonderful forum where you can talk with so many other members who share your similar diagnosis of Essential Thrombocythemia. You’re not alone here!
I’d like to invite you over to this discussion where you’ll meet @janemac @nohrt4me @pumpkin1 @1995victoria and the others…
Essential Thrombocythemia https://connect.mayoclinic.org/discussion/essential-thrombocythemia-26a26f/
Feel free to pop into the discussion with any questions you might have. More ET discussions can be found by typing ET or Essential Thrombocythemia into the search box on top.
Is your next appointment to discuss the results of the biopsy?