Hello everybody I am going to MD Anderson on Monday for the first visit I haven't seen a doctor yet and I'm told that's standard practice is to get your usual blood work and a bone biopsy. I am a chicken s*** when it comes to plain old needles let alone a bone biopsy.
Has anybody had a bone biopsy how bad is it?
How many of you out there at the bone by accident and this is standard for CLL diagnosis comma let alone standard if I haven't even seen the dr. Yet?
Never had a BMB. Currently under treatment.
Hi, yes it was scary at first. I thought it will hurt as hell because you can still feel something but I was more scared than it actually hurt.
I had only 2 biopsies though.
Don't be scared as it hurts only 1 of 10 on a scale
I agree, on a scale of 1-10, bmb is 1.
I've had 2 done, both post FCR, one in France and one in the UK and neither were a big deal.
There's a collection of members' experiences with bone marrow biopsies in this post:
healthunlocked.com/cllsuppo...
Given the number of bone barrow biopsies done at M D Anderson, I'd say your likelihood of having a 'good' experience is excellent. I was lightly sedated for mine, so don't recall it, but I found sitting down or driving over bumpy roads uncomfortable for around a week afterwards.
Where you live and who you see largely determines whether or not you'll be asked to undergo a bone marrow biopsy. It is not required for a CLL diagnosis - a Flow Cytometry test is usually sufficient for that. However, having one is the best was to find out to what degree your CLL is affecting your body's ability to churn out the many 100's of billions of new blood cells needed daily. They can also greatly aid your specialist in determining what's happening when that's not clear from other tests, e.g. when blood cell line counts are lower than expected. It is suspected that auto-immune complications are present in some degree in all CLL patients and having a BMB done will help your specialist determine the relative contribution to that from a CLL infiltrated bone marrow, enlarged spleen and auto-immune activity on the different blood cells.
Neil
Yes I have had a BMB .Its not too bad at all .To me it just felt a bit tight towards the end .That is the only way I can describe it .You don't see the needle anyway and the nurse that accompanied the DR that did it was talking to me most of the time .
It also doesn't take long .
Brenda. ☺️
Please, please do not worry, the thought of it is worse than the deed. The next thing is you will be giving out reassurance to there.
All will go well for you.
Best wishes.
Sue
I have had (2) BMB outside of MD Anderson and (1) scheduled at MDA, May 2016. The ones I have experienced involved local sedation. I have a low tolerance for pain and I told the Dr. performing the procedure and he accounted for that through the local. For me the Dr. talked me through it as he was performing the procedure. All I felt at most was bearable pressure, not pain. On my 1st visit to MDA, I was scheduled for a BMB and Scans, which were changed when I got there. The only thing I had to do was vitals, provide DNA sample via saliva, lab work, chest X-Ray and time with the Specialist, Perhaps the change was due to my local oncologist providing the path reports from my previous procedures and a recent FISH. One of the things I learned from MDA is many who come to them for CLL have been misdiagnosed. My local oncologist told me that the BMB procedure at MDA are very skilled and nothing to worry about. He did his residency there and assured me that they are the best at what they do. Stay away from YouTube. My experience was no comparison to what I viewed on YouTube prior to my 1st one.
Rest assured that You will be in good hands!!!
Paula
Misdiagnosis?
Dear Paula, When you said, "One of the things I learned from MDA is many who come to them for CLL have been misdiagnosed", I came to full alert.
When the hematologist/oncologist looked at my blood tests 4 months ago, he diagnosed CLL with certainty. But still he wanted to do a Bone Marrow (BMB). 3 other doctors who looked at the results got quizzical looks on their faces. 2 of them (not specialists) thought it might be some kind of inflammation.
When I told the Hem/Onc I was going to do IV-C therapy, he said disparagingly he didn't think that was going to work. After 30 sessions of IV-C and 3 months later, new blood tests indicated WBC had dropped 33% from 18,000 to 12,000. Lymphocytes, Hb, Neutrophils shifted into the normal range. Curiously. platelets dropped 67% to 113. Yes, ultrasound says spleen is enlarged.
Hem/Onc opinion now was maybe it wasn't CLL, but I should keep doing what I have been doing. Huh? I had told him 3 months ago I was very reluctant to do BMB and he seemed to lose interest in my case after that.
Meanwhile, I have the symptoms of chronic fatigue and night sweats and enlarged spleen.
So is BMB necessary for diagnosis? Usually no except "to assess haemopoietic reserve (particularly when autoimmune cytopenia is suspected)" according to Best Practice of British Committee for Standards in Haematology bcshguidelines.com/document...
So are there examples of misdiagnosis that affect treatment? Yes, according to telling the difference between B-CLL/SLL and MCL. ncbi.nlm.nih.gov/pubmed/171...
So I am still wading through just how reliable all of this medical diagnosing is and what it means.
Anyone's input, experiences, or knowledge is very welcome.
Joseph
Hi Paula,This may be a silly question but when you say misdiagnosed do you mean that some people in fact did not have CLL ?? Thanks,Pumpkin
I never investigated what it meant, but I assumed it was not the diagnosis a person had been given prior to coming. If you go on the website, it may be under a place to come for 2nd opinions. Can't remember, but it is in "black and white" under one of the information tabs as a reason one should choose MDA. Hope this helps.
Paula
I have had about 12 biopsies and it's not a problem. Ask for more local anaesthetic if you're worried and take two paracetamol. To be honest the next morning you might feel like you were kicked there but I have always been able to do normal activities almost immediately except shower for 24 hours to keep it dry.
After applying last July to be followed in "Natural History of CLL" (real name is in link below) I got a call 3 weeks ago to participate. Drove to NIH yesterday 2.5 hours w/o traffic. (always trafic so 3 hours). The doctors suggested I have my first BMB and CT Scan. Not a requirement but docs wanted to set a baseline to compare for future interventions. Asside: Met Dr. Adrian Wiestner in the hallway. So I too am curious regarding this experience. My appointment is September 2016. I was diagnosed as Normal CLL on Nov 2014. I feel normal but am collecting small lymph nodes on my neck. Good to hear not too much pain. 1 out of 10 is manageable. Any comments regarding others having NIH experience is appreciated!
I have had 3 BMBs ... 1 by a local oncologist & 2 at MDA under IV sedation with propofol. I did not do well with the BMB by a local oncologist. At the point where the dr was trying to core the bone, I began perspiring profusely and then throwing up with dropping BP. At MDA at my request, the BMBs have been done under sedation. I received propofol via an IV, and 15-20 minutes later, they were waking me up & sending me on way. The first BMB at MDA was bilateral ... one on each side, left & right hipbone. My diagnosis is SLL (small lymphoctyic lymphoma - a variation of CLL) so I am treated at the MDA Lymphoma Clinic.
As you can see, the BMB experience varies from patient to patient. My dr only needs BMB results if there is a change in my treatment plan. I have been on ibrutinib now for 23 months & I am doing well.
Wishing you the best. You are going to one of the best hospitals for CLL & cancer in the U.S.
Lynn,
I too am at MDA and have been taking imbrutinib for just one month. Have you always taken it it alone or in combination with other drugs. I am taking rituxin infusions as well. Thanks!
Jenxgen ... I took rituxan weekly for 4 weeks beginning in April 2014, and then monthly until through Feb or Mar 2015. I will hit my 3-year anniversary on ibrutinib in April. I see Dr. "Sam" in the lymphoma dept for SLL.
The rituxan & ibrutinib was my second drug series. Prior, I took rituxan & revlimid for 3 months but it had no effect.
Wishing well with the combo,
Lynn
... and on the plus side you can't even see the needle going in !
Worry was worse than the procedure. My oncologist suggested a friend or family member could come in and hold my hand for reassurance if it would make me more comfortable. I was fine without anyone. I didn't want to have one more worry with someone in the room, but you might consider it. I didn't have any pain, just a little pressure. Best of luck, Sally
I had two, one before and one after treatment. Mine was done at rear of pelvis. It was a bit like someone pushing firmly with their finger. Like another respondent probably a 1 out of 10 in the pain stakes. More worry than actual for me. I believe (could be wrong) it is the only way of checking CLL levels in bone marrow hence giving a more complete picture especially for before and after treatment.
Rob
I was diagnosed over 3 years ago and never had a BMB. My doc (Canada) says that it is not as common a practice when you are first diagnosed as it use to be. She can get all the information she needs from blood work. I would think it is more likely to get one before and after treatment.
I have had 12 bone marrow biopsies, all done by my oncologist in his office. He just injected a local anesthetic at the biopsy site and I was good to go. There was some pain a day or two later in each case, but nothing really bad. I think it depends on who is doing the biopsy. My oncologist was so fast, it was done before I knew it. Will keep you in my thoughts.
I was diagnosed last year and had a bone biopsy done. From what I understand it is a normal procedure done here in the States. It wasn't that bad at all. Just don't look at the needle like I did. I live in Texas so I plan on going to MD after my next visit with my oncologist for a second opinion. Don't worry about it.. It's really not that bad.
Best wishes
BC
They will almost certainly want a bmb at MDA, is pretty much standard for their diagnosis system.
I've had about 8 bmb's over the years, all at MDA. No problem with any. They have a separate department with half a dozen techs there all the time who do nothing but that; they're good.
They will shoot up your rear with anesthetic then go in and make 2 draws, one for marrow sample and one for fluid. Only takes a minute or two. They'll ask you beforehand if you want the all manual or machine assisted procedure. When I started having it done 12 years ago the manual way was all there was so I have just continued with it but I think the other way is as good or better.
You will be able to walk afterward. I always stay at the Rotary House, the hotel attached to MDA, and it's a 100 yard or so walk; no problelm. But you will be sore for a few hours after the anethetic wears off. (There is a nice bar in the hotel!)
Dear Swissnology, I have been going to MD Anderson for 6 years now, and my understanding is that the bone marrow biopsy is standard practice for the doctor to learn just what your genetic profile is and how much of your bone marrow is involved to help determine your CLL status and how close you may be to treatment. In other words, it is a tool they are able to use to your and the doctor's benefit. The more you know, the better armed you will be to fight this.
Having said all that, I have had many biospies done as part of a clinical trial, and I can assure you that the technicians, nurses and doctors are most careful, considerate and aware of your comfort. They are very sensitive to your care. I have had a couple biosies that gave me some pain afterwords, but was manageable with tylenol, and the pain dissipated over time.
Since this is your first visit, I encourage you to bring someone with you, take notes, and record the meeting with the doctor if you are able. The CLL terminology is all "Greek" at first, and it is a lot to absorb. Afterwards you will have your notes and/or recording to refer to and can use this site and others to help you find answers to your questions.
Sorry this is so long, but I hope it has helped you in some way. Bless you on this new journey.
I was diagnosed about 7 1/2 years ago, still watch and wait, thankfully. I'm in the natural history study at NIH and although a BMB is part of the protocol, I have not had one yet. Adrian Weistner is the doc and part of the reason is the lab back up, but mostly he's waiting on it until I need treatment.
It's not all that bad. A bit uncomfortable for a brief moment at worst. I've had 2. One at diagnosis and one 2 months after completion of treatment.
First I want to say thank you to all of you!!! Everyone here has been a god send. Always helpful and quick replies. Please know my best wishes and thoughts go out to all of you. With all of this great energy concentrated in one place, we will kick clls ass.
I know you already got more replies than you "needed"...lol! However my two cents would be to maybe take a light tranquilizer (if its ok) because I was so tense, that for the next few days you would think the biopsy had been at the base of my neck, just from the tension and nowadays they "walk you" through procedures describing what they're doing step by step and I dont know about others, but to me, it doesnt help me at all. I almost prefer for them to do their thing (or "thang") in silence and just tell me when is over....Lol!
Best of luck!
May not do it on a first visit. However if/ when they do feer not. I've had 3 because I'm in a trial. no pain from the BMB during or after. First you get a shot of Lidocaine to numb the area - that stings a bit ( like the flew shot stings) they rub it in giving it a few seconds to penitrate then another lidocaine shot that I'm told they do but do not feel. Then the BMB all I feel is some pressure and a strange feeling as it is removed. No pain.
Remember to exhale
It does not warrant any “fear and loathing.” The worst part is that you can not get the area wet for 48 hours – so much for a long hot shower or bath.
I have had two bone marrow biopsies done at MD Anderson. PA's perform the procedures and usually pull the sample from the hip. The PA's do this all day, so they are experts. 10ccs of buffered lidocaine are used as a local anesthetic. For me, the pain was when the lidocaine was administered - a quick sharp stinging pain. The procedure was not painful but an odd sensation.
When I had my first bone marrow aspiration with biopsy, I ached for several days after the procedure. The worst pain was when I would be sleeping and would roll on my back – ouch! I had my second one in January. I expected to ache for the next several days when the lidocaine wore off, much to my relief I experienced no aching. The first time my bone marrow was hyper cellular with 80% CCL involvement. After 12 cycles of ACP-196, my bone marrow was in better shape - only 30%. There are lots of theories.
As to providing blood samples, do not worry. Odds are you will not feel anything. The people who do this specialize in blood draws. When you have to provide blood throughout the day, they will place a line in your arm.
By the end of your first day at MD Anderson, your fear and loathing will be a distant memory. You will wonder why you were ever fearful. You are at a great place. Mentally on my first day at MD Anderson, I was on "Last Stand Hill." That was at 6:30am. When I left at 8pm, I was celebrating my good fortune.
I have had three bmb's, the most recent being day before yesterday at OSU. I have hard bones, and this one lasted about 45 minutes. They have all been uncomfortable but bearable. I too am a bit squeamish when it comes to needles of any size so I can identify with your concerns. I have some discomfort two days later but not so bad that I need meds. My initial fears were not totally justified, but I'm certainly not looking forward to my next one. Wish you the best possible experience.
Right on !! I'm 'looking forward' to my first BMB Ap 11. So these posts came at an exellent time. Glad to hear it isn't painfull,thank you so much all.
Hi. It's really nothing to eorry about. Bu I must admit that I worried a lot the first time, and I'm a reg. nurse😉
I have had three bmp's (bone marrow punctures), two of them with biopsies. The local anesthesia worked completely well, but the third time, the haematologist started the puncture a bit too early, so he had to interrupt it and give me a little more anaesthetics. It' absolutely ok to tell the haematologist that you are scared, you will not be the first anxious patient he's had. Good luck👍
Ask for Victoria to do the bone marrow , she is fast and as painless as she can be.
I was put under sedation for mine. I am newly diagnosed with CLL/SLL. If your insurance covers it, its was a snsp.
Be encouraged, it did not hurt at all--I felt a pulling sensation. What a relief it was. I also go to MD Anderson. They are very skilled and well practiced.
Hi as others have said it varies as to who does the biopsy. I have had three. One by a student doctor. It hurt like hell after. One by a male doctor who done a great job. Then one done by this doctor who I had no faith in couldn't do it right and wanted me to let them try again but I refused. I have since told my consultant that I will not have any more done. To me it's about getting the someone who knows what they are doing. Good luck and best wishes
So to all my friends out there is it rude to ask how many of these they've done and if there is a student that you do not want them
It's your body! Perhaps you could explain how very nervous you are and then ask, "If you were really nervous about the procedure, would you be happy to have someone with your experience perform one on you?"
Neil
My first BMBs were done by the 'best' according to those on these CLL blogs/lists. I did everything possible to relax, breathe properly, and prepare myself for my first. It turns out that it is very much dependent not only on the expertise of the person with the needle, but your own pain tolerance. Mine is not high at all. All the yoga, breathing, relaxing...nothing worked to keep me on the table. After they scraped me off the ceiling it was decided that good drugs would be a better alternative. It was. Conscious sedation with Fentanyl is an intravenous procedure that solved all issues for me. I have never had post-procedure pain and continue with my usual daily routine and exercises the same day.
they wanted to do a bone marrow biopsy on my but I refused on my first intial visit.. they ordered a flow cytometry and that determined I had CLL
Good answer
I've had 2 flow cytology test that confirms CLL but the biomarkers which I know very well. But if somebody that's worked in the genomics field all of these B cell Inhibitors are great to allow lymphocytes to die but I do not see where the address how the lymphocytes are created from the bone.. so I believe it is a necessary test to understand how far the cancer is and at what level it's creating cancer. I am concerned that I have not seen a doctor at MD Anderson. I've seen 2 oncologist from two other hospitals that have confirmed my diagnosis. But I don't understand an invasive test without first talking to the physician
I was in to my doctor three weeks ago for my six month check up and had CT's of neck, chest, and abdomen. New small nodes in neck. We talked again about having bone marrow test and she's aware I don't want to do it due to all the horror stories I've heard about pain. CT's showed new adenopathy. I feel good most of the time, do what I need to do each day, do get tired by 9 at night and some nights can't wait to get to bed. Sleep about nine hours or so which is more than I used to sleep. Getting to my point; after reading the comments on the test, maybe I should have one for a baseline. Seems like MD Anderson is the place of choice here in the US.
People at various centers in the US have commented about who at those centers does the best job. I believe the experience has a great deal to do with who does the procedure. I had two done with local only. I honestly don't remember pain, just terror going in. My second doctor assured me that he would talk me through everything step by step. I told him to tell me the history of Greece (he was Greek) instead. He did - at least 4000 years of history condensed. My third biopsy was done with sedation. I was surprised that I had some sensation (not really pain) afterwards, whereas I had felt nothing after the first two. I was discussing that with a nurse recently. She said that if you are sedated they usually use a larger needle to get more of a sample. Makes sense.
I would have no problem refusing to have someone newer do my procedure. I have written on consent forms for various procedures that only my doctor is to do any part of the procedure. I don't care who watches, but when I have carefully selected my ologists for their skill, I don't want someone else practicing on me.
I'm sure I will upset the anesthesiologist I get tomorrow when I go in for a transesophogial echo and cardioversion. The last time I had it done the idiot I got knocked me out before my doctor arrived. You are supposed to be awake for the first part of the procedure so you can follow directions. It won't happen this time!
Hope your transesophogial echo and cardioversion procedure went well Pat.
Regards,
Newdawn
I don't want to alarm you. My husband's experience was different than those described here. He has had two bmb's, nearly a year apart. He has a high pain threshold and has endured a lot. Both bmb's, done by two different oncologists, were extremely painful. He asked for and received pain medication before the second one but it didn't help. If we ever have to go through that again, we are going to be very assertive about pain management.
I'm having my fifth one Tuesday at MD Anderson without sedation and they are awesome I've had worse pain all I feel is pressure and it's not bad at all
I had one and was sick for a week. The Oncologist was going to give me three shots , when he gave me the second shot I started getting really sick. After the second shot the Dr walked out and I told my sisters that something was wrong. I felt so weird my blood pressure was 190/100. They called the Dr. back in and he only gave me 2 shots instead of 3. I had to have someone stay with me for a week, because the drugs they gave me were not coming out of my body. My regular physician asked what did they give me and should never have that given to me again. I try to tell all these Doctors I cannot take medicine. I did not have any pain during the procedure.
I have a friend who had one two days ago. No pain. None. Not during, not after. I would still want to be sedated. 
Be aware, at MDA they are very strict about giving the 'awake sedation' for the BMB. YOU MUST HAVE SOMEONE WITH YOU! I was there alone. Learned too late that I could have hired a 'baby sitter' from a local service. Plan in advance if you want the good drugs!
1st Bone Marrow Biopsy
Your first bone marrow biopsy?
Martini before the Bone Marrow Biopsy work well!!! 
