I've been on the Ibrutinib/Venetoclax trial for 8 months now and last Friday my blood test came back CLL free.
I underwent yesterday my 2nd bone marrow biopsy since I enrolled the trial. My bones are very dense and the first biopsy was nothing else than a torture with excruciating pain.
I was really concerned about the 2nd biopsy and asked this time to be sedated. What a difference 125 mcg of Fentanyl can do. No pain at all, you don't even see yourself go under or come back.
My first question was "when do you guys get it started?" and their answer was "it's already done". I have now no fear for the next one.
I just wanted others to know there is no need to freak-out. Yes we all do freak out with the idea of a huge needle entering our hip bone and the aspiration that follows. I've experienced that once and won't do it again, at least without sedation.
It is true some people feel almost nothing because they don't have dense bones but why even find out when they actually do it to you? Just ask for a sedation and you'll be thanking me.
I am now waiting for the results and will keep you posted. MRD negative or not? that is my question. I can't wait to say "Goodbye CLL" and hopefully forever.
Be well!
Written by
lamboman
To view profiles and participate in discussions please or .
Not all institutions offer or allow sedation. Always ask for the person - doctor, nurse, or technician - who does them most often. I've had two done with lidocaine only. I would have gone for some Ativan or something, but had to drive. The people who did mine were fantastic. I remember being panicked, but honestly don't remember pain, and had none after either procedure. My cousin has bones like rocks. He had no pain, though the doctor had a hard time getting his sample. He said that the doctor was more upset than he was. We are all different!
As I said, we are all different as far as the skill of the person doing the BMB and our threshold of pain. Not everyone has an easy time, but not everyone has a bad experience, also!
I have a high pain threshold. Tuesday night I fell head first on ceramic tiles. The chair slid and I went flying landing head first Still not as painful as that BMB maybe it depends on who’s preforming it? Another procedure I can’t stand is a mammogram. .. in 2016 they squashed my breasts so hard I thought they had flattened them. Left the place not wearing a bra that’s how bad the pain was! Straight out told the technician “ I’m in so much pain your machine may just give me breast cancer!” Pain is relative though and the human brain tends to forget it. Why else women have babies over and over?
I’ve had five BMBs now, only one was very uncomfortable. I have hard bones according to the last person to do one, she was excellent. I think the four that were non-events were two different people. Those two were were chatty to start with, then focused.
The one that was uncomfortable was the only time there were two in the room (other than me). They seemed more interested in showing me the resulting core than anything else. Whilst I was interested they should have asked me if I wanted to see it first - some might not have wanted to.
My doctor, who was Greek, told me he would explain every step of the process. I told him to tell me the history of Greece instead. He did - thousands of years of history summarized in the short time the procedure took. Put the American education system to shame!
My last BMB was much more comfortable than the one before. Expertise is key! I also took 1 mg of Ativan, but I think that I would have been fine had I not. I hugged the NP afterwards because I was so grateful 😊
Having just had my second which went on for 1/2 hr - worst procedure I’ve ever had & Ive had some!!! Will in future demand sedation. My first was fine because I was in a coma 😜
I remember my first bmb. They told me they were giving me the same meds dentists use to sedate people, that I would be awake but not remember anything. LOL, I remember everything. I remember telling them I was completely awake and not feeling the effects of the sedation. I remember feeling like someone stuck a big-ass needle in my bone.
When they set me for my second one at MD Andersen I confessed my anxiety and wussiness to my CLL nurse. She suggested I do it under sedation. I never knew that was an option. That was a no brainer for me.
It reminded me of my conversation with my dentist, a good friend, who was going to do a tooth extraction for me. I asked if I should get sedation for it. He told me that most people do not, but knowing what a wussy (close to the word he actually used) I am, it would be a good idea for me and he wouldn't have to hear me whining during the procedure.
His bedside manner might have been terrible, but he was right about me. Knock me the heck out.
If they gave you versed, which is supposed to make you forget, as well as not be aware of what's going on, I can confirm that it doesn't work for everyone. I've had doctors insist that I would not remember anything during various procedures when I told them it doesn't work for me. I have repeated back every word they said afterwards.
Yes, I completely agree with you. I postponed my visit to hematologist by 2 years, (before diagnosis ) due to the fear of pain during bone marrow biopsy. Finally, when I couldn't function anymore, I agreed to the procedure and was diagnosed with stage 4 MZL. The whole experience was truly torturous. The consequent biopsies were done under conscious sedation and were completely painless. I am so surprised and disgusted that in the XXI century cancer patients have to suffer when little anesthesia could remove all the anxiety and pain.
I read your post on bone marrow with interest. I have joined a newer clinical trial at Sloan Kettering involving three drugs namely Zanubrutinib (aka BGB 31-11), Obinutuzumab and Venetoclax.
This past Thursday I had a bone marrow biopsy. The process to remove the soft marrow was not a problem,. However, probably the worst sharp pain I ever experienced in my life came when they tried to rake a piece of bone. I’m told that my bone is “squishy” inside as may be with age. They had to stop the procedure. I am now petrified to have it again as required by the trial protocol. My only option would be sedation if they will do it.
I’m 70, 13 q deleted and unmutated. My nodes are basically packed and my blood is marginal.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Bone marrow 
Bone Marrow Exam
1st Bone Marrow Biopsy
Bone Marrow Biopsy Experiences
