Bone marrow biopsy: I am scheduled for a bone... - CLL Support

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Bone marrow biopsy

napa
napa

I am scheduled for a bone marrow biopsy, any suggestions regarding local numbing medication vs IV sedation? I have heard the procedure can be very painful.

98 Replies

I have had three bone marrow biopsies, all done with mild sedation. I have a low pain tolerance and with the sedation, I could feel some mild pressure, but no pain. I know everyone is different, but I will insist on mild sedation if I need another one. For me, it was one thing that lessened my anxiety about the whole procedure.

Cindy

francc
francc in reply to Jackpot

No question: it depends on your pain tolerance. We are all different from one another.

i've had 3-all the normal way. i inquired once about sedation-at least from my facility i had to reserve 2 weeks in advance. the regular way my doctor did it right there

Newdawn
NewdawnAdministrator

I’m due my second BMB in April and had the first without too much ceremony using local numbing sensation and done by the specialist nurse. The thought of it was worse than the actual procedure and I think much depends on the skill of the person doing it. My concern this time is my husband can’t be with me due to Covid regulations and it really helped me having his support last time, especially as my joints and back are painful to start with.

My Unit seem to view medication as unnecessary but will book theatre time if absolutely insisted on.

I’m sure you’ll be fine. It was more uncomfortable than painful for me but it’s never a pleasant experience.

Newdawn

I’ve had two. Both were done by nurse practitioners with no pain. It was over in less than a minute each time. The second one ached the day after for a couple of days. The anticipation is far worse than the procedure. At least that was the case for me.

Good luck,

Mark

I`ve only had one done and that was under LA. Never felt a thing except a bruised feeling the next day which soon went away.

You will find many different experiences here in this group because everyone is different and has a different pain threshold and anxiety level. Had 4 so far all with local only. First one was a bit painful since the (very experienced) nurse practitioner had to try 3 times due to a dry tab. The next 2 were very easy without pain after local anesthesia. The last one no pain except for the aspiration which did not hurt the 3 times before. So you see even in the same person the experience varies. I would say overall it was very straight forward , quick and not a bad experience (sounds strange). My concern prior was not justified at all and I am no longer worried should I have to have another one (likely)

I have had two. The first one they told me the med they gave me would put me in lala land and I wouldn’t remember a thing. I kept telling them when they started that I was totally awake. I hated it, but I’m a big wuss. It didn’t hurt all that bad, I just wasn’t planning on having any pain.

My second one I did under sedation. It’s really not that big a procedure and not super painful. But anyone who is a wuss should opt for sedation. I’m a wuss.

Had 3 and felt nothing. They gave me an IV 2 min before to relax me. I was awake and never felt anything. The anxiety before it is worse than the procedure. Takes seconds for them to do it. Slight soreness around site for a day or so. Good luck! 💕

Johne1
Johne1 in reply to GMa27

Seconds to do it? Not mine. She put the needle in, extracted some liquid and pulled it out. Then told me she had to put it back in and wiggle it around to get some bone matter. I think she was a sadist, as she asked me how it felt as she wiggled the needle around. I faked it and said it hurt a little bit, but I didn’t feel a thing but a little pressure. She was enjoying it way too much. 😅

GMa27
GMa27 in reply to Johne1

How awful !

sujitsur
sujitsur in reply to Johne1

I had a similar question by the doctor performing the biopsy.I started laughing, and he laughed too and acknowledged that that was a silly question

The procedure itself (I had 4, all under local anesthesia) is more unpleasant than painful as you feel the syringe and the drill though it does not hurt, and in fact it is less painful than the pinprick of the LA.

But the anticipation of the procedure feels way worse than the feelings while undergoing it...

Well I am going to play "can you top this", I have had 6 over a 12 year period and they all hurt. All performed by different CNP's. The last one about a year ago at Penn Medicine was the least painful . I never get any type of sedative, just "cowboy up". I'm sure they won't be the last. Get sedation if you can, they just gave me a piece of leather to bite down on.

Sepsur
Sepsur in reply to steve5441

🤣🤣 - mine have all been a bitch too - the last told me it would take 5mins, 40 minutes later.....the air was like a Tourette’s convention. Got one on 23/2/21 yippeee

Psmithuk
Psmithuk in reply to Sepsur

Make sure you ask them for a bit of leather to bite down on.......(Apologies for being facetious).

Could you ask for some sort of medication first, citing your previous experience?

Sepsur
Sepsur in reply to Psmithuk

I’m going to

Johne1
Johne1 in reply to Sepsur

“the air was like a Tourette’s convention” potty mouth 🤣

mrsjsmith
mrsjsmith in reply to Sepsur

Sepsur,

Your reply made me laugh and reminded me of an unfortunate incident. I also found swearing loudly a great release but I didn’t know there was a boy in the next bed who refused his after hearing me. Moral of story make sure no other patients are in earshot.

Colette

Sepsur
Sepsur in reply to mrsjsmith

Unfortunately the ward was heaving too 🤣🤣🤣🤣🤣

I’ve had two, both with locals. Anticipation is worse than the procedure.

I had local numbing and the doctor did it at her office. No discomfort only a bit of pressure. The anticipation was much worse than the procedure. Maybe it has a lot to do with the experience of the person doing the procedure? Best of luck. Sally

I had one a few years back with local numbing. It hurt a bit but it was over quickly. If I had to go again, I’d have it done the same way.

For me, it felt like a tight muscle cramp, with 5 secs of sharp pain. The dentist still bothers me more.

Where are you having it done? My first was in sept at md anderson. I watched an elderly man get called back, he asked if Amanda was doing his bma and was told no she’s not here. He grabbed his jacket and was going to walk out when he was told just kidding. He said I don’t let anyone else do it. I chuckled to myself unknowing. I had Amanda that day as well. Piece of cake. Some uncomfortableness during but nothing off the scale and had no issues after. Had another a few weeks ago before starting clinical trial. Sadly, I learned why the older gentleman didn’t want anyone but Amanda. I had young PA who stated Amanda was her boss. I can’t even explain how excruciating it was. 2 tries and told me my bone was not cooperating 🤔. My husband is Orthopaedic surgeon and not allowed in room during procedure, but said she entered too high on my hip, must not know anatomy because she hit my cleaneal nerve as I couldn’t stand and put full weight. I had no issues first week starting Acalabrutinib but had issues from bma. This isn’t to scare, it is to ask how experienced. I had a very new, needs to not practice on patients PA. I will make sure to request I’m scheduled with Amanda when I’m due for a 3rd one.

Ask questions, make sure you have someone that has experience.

HopeME
HopeME in reply to MaxJ016

You jogged my memory about something that occurred at my second BMB. When the NP was starting she said I can see that your first procedure was done on the right side. I’m going to go in on the left side. Evidently, these leave marks. I’ve always wondered but never asked does the bone area get unstable after numerous procedures? Probably not as I recall that Deb in Oz had close to 20 BMB procedures!

I also remember at my first procedure that an experienced NP was supervising an inexperienced NP and the experienced NP exclaimed that is beautiful as I felt pressure building. After the fact I figured out that she was happy to see bone marrow being extracted up the tube. At the time I thought she was commenting on my wonderful anatomy😀.

Paintarty
Paintarty in reply to MaxJ016

Sadly my first experience was extremely painful even though l had LA, and took far too long. The pain from the aspiration process was off the scale, l think she must have hit a nerve as pain shot down my leg. l ached very badly, feeling like l'd been kicked by a horse. l even needed a week off work as the continued aching was so bad.The second time I explained the pain I experienced the first time and asked for it to be performed on the left hip time and with also better pain relief. So l was given a LA and gas & air.

It certainly helped and l had less pain and it was much quicker, without any aching pain afterward, other than a bit of soreness around the site.

For my third BMB at a different hospital l explained at l needed the LA and gas & air. So when l went to my appointment l was expecting this, but in the room l saw there was no gas & air. Needless to set, panic set in.

However, l'm delighted to say the LA was sufficient and the BMB and aspiration were performed very quickly in my left hip. Although it was uncomfortable the pain was minimal.

So l think, as previously stated by another person on here, much depends upon who carries out the procedure, and possibly how high or low on the hip it is performed.

SofiaDeo
SofiaDeo in reply to MaxJ016

I agree with MaxJ016, the skill of the person doing it means a lot. I have Local Anesthesia but need longer than most people for it to kick in, so I wiggle my feet/fingers while waiting, to move my blood around. I have the same need for extra time at the dentists....try not to get a medical resident, they are likely unskilled, mine was the Worst. I know they need the practice, but my opinion is, let them do it on people unlikely to need multiple BMB's......that hip ached for several years! Whereas a skilled person can do it several times near the same spot if the sample crumbles (it happens to me intermittently) & any ache/pain goes away after a few days. But the clean, single pokes don't hurt, just that pressure feels strange. And don't have a stomach full of food/water just before!

Hi there — from your screen name we might be neighbors! My onc did one late the day after I was diagnosed... He came and checked on me early (I had been admitted) and before he left mentioned he’d be back mid afternoon to do a BMB. Said it wasn’t too bad and I’d be numbed. It sounded like the WORST thing ever but wanted to be brave. I dreaded it every minute ~~ probably kept my mind off the diagnosis! When he came in, I was sweating and shaking. He gave me a big local, described the procedure in maybe too much and got to it. I was not painful at ALL... but I could FEEL the corkscrew/hammer (that is what the tools look like) combo at work and that was one of the strangest sensations ever.

Your mileage may vary but I would rather do local again.... just be prepared for some interesting, not painful, vibrations 😅 Good luck!

I have had 4 with local. I would say that the anticipation was worse for me than the actual procedure, especially the first time, when I had to wait about 2 hours for it to start. I am also a person who numbs slowly, so I asked them to wait an extra 5 minutes for the lidocaine to take effect. For most of the procedure, you will feel more pressure than pain. It helps to have them talk you through it, so you know what to expect. Some of these procedures were better than others, but for the very limited time that you feel pain, just focus on a spot on the wall and know it will soon pass and you will be fine.

Hi, I have only had one (second one due thisTuesday). I only had the local anaesthetic and found it a very easy ride so hoping for the same again second time round. There was a little tenderness for a few days afterwards but nothing that I would class as real pain. So do hope it will be the same for you.

U.K. I had one done last year , local anaesthetic on the site and then entonox ( gas / air ) which really helped. More uncomfortable than painful

I’ve had six (possibly seven). First two either end of FCR back in 2012 I do not remember as being painful. However, it is true that I’d heard they were and anticipation was my main issue.

The rest were as part of the trial I was on so during 2017and 2018. One was pretty uncomfortable and the rest were non-events.

In all cases I had a local injection near to where the procedure occurred.

In the one case that was pretty uncomfortable the two people carrying out the procedure seemed more interested in showing me the results than anything else. I’d prefer not to have them again if possible.

In the rest of the cases I’m pretty sure I got the same person doing the bmb. Chatting to her I found out what I considered to be a useful piece of info. She thinks my bones are hard which makes it hard work for her.

Now, like all my appointment I try to get an early as possible one. In the case of the bmbs I try for first slot of the day, on the thinking that for the person doing the procedure it is quite physical so let me get them at their best. I’ve no idea if that is valid thinking but makes me happy.

When booking appointments at the hospital because I live quite a way (60 mins drive) from the hospital I’m always being offered later appointments but I prefer as early as possible. Heading there on Tuesday and they called to book appointment as they’d had to move it a week offering late morning as I had to travel a long way. Managed to get them to move it to 8AM.

best to all, stay safe, rob

I was accused of hard bones too, and wondered if attributable to taking regular supplements of Mg, D3 and K2.

I don’t take supplements, so unlikely to source of comment for me. The practitioner thought it was good for me and not so good for her hand.

I had it. Was painless. You need a skilled doctor with good eye hand coordination.

2 paracetamol worked for me just after the biopsy.

I have now had 3 biopsies and had just local anaesthetic. One was when I was seriously ill in hospital. The first was painless the other 2 were a little uncomfortable but mainly because they were going into the same site in a short space of time. I think you have to go into it trying to be as relaxed as possible. The more tense you feel the harder it is to complete.

Having a BMB can be such a varied experience. I've had 4 so far, spanning everything from surprisingly painless to being left quite traumatised.

My first was pretty routine, experienced nurse, straightforward and over before I'd even got my head round it.

Second was probably the most painful experience I've ever had in my life. The consultant performing the procedure did t wait until the local anaesthetic had started working. I was in so much pain I couldn't move or say a word. Left me feeling very apprehensive about further BMB's

3rd I had local anaesthetic as well as gas and air. Struggled to aspirate as I was very dry,m which left me requiring a 4th which again wasn't very successful. I had a junior consultant, inexperienced and she had trouble aspirating. Had a few goes at getting a tap but ultimately was unsuccessful. Was there for about 90mins.... not the greatest thing to go through. Left me with some severe bruising and scarring of the hip right that took about 3 months to recover from.

I admit, I'm probably an outlier in terms of it not going well. I'm just unlucky as most procedures go very well and without complications.

I’ve had 3 BMBs. The first was administered by a very senior specialist and was no bother. I went to the movies straight after! #2 was administered by a much younger doctor and was very painful — so much so that when it came to #3 I asked whether extra local anaesthesia could be involved. So, as well as a local anaesthetic, I was given an inhaler that did the trick for me. Here’s an extract from a research study about it:

Pain during bone marrow biopsy (BMB) under local anaesthesia (LA) is reported in 70% of patients, of whom 35% rate the pain as severe. Pain is experienced during both the biopsy and the marrow aspiration. Many medical centres use conscious sedation involving benzodiazepines and/or opioids administered orally or intravenously for BMB analgesia. Methoxyflurane (MEOF) is self-administered by a handheld device (the Penthrox inhaler), which is licensed in Australia for the relief of pain associated with short surgical procedures.

Mine was absolute agony and I've had sciatica ever since. Anaesthetics didn't work and nurses had to call the specialist to do it after trying unsuccessfully for ages.

Hi i had my first bone marrow biopsy in oct 2020. I had anesthetic to numb the area and found it to be alot better than i thought. I only really felt some pressure which didnt last long. The nurses were lovely snd constantly checked i was ok. Please don't worry and good luck x

I can understand your concern. I'm not sure if I've been lucky but I have had 3 with local antistatic and felt no pain just some pushing and a little discomfort. Good luck.

Hello, I requested enternox - gas and air and it was bearable. All the best Lynn

I've only had one, done by the specialist nurse practitioner. She used a local anaesthetic first, then did the aspiration; I wasn't even aware she'd done it. Then came the trephine; it is basically a hand-operated hollow-core drill about 4mm dia. It wasn't painful but for the 15 seconds or so it was uncomfortable enough for me to use one or two "robust" words. Samples taken, dressing slapped on, walked out, drove home, had a normal day, slept like a log, no after-effects, no pain, job jobbed. Sara said she'd heard far worse than what I said.

So, I would say, don't panic, don't be afraid, yes it will hurt briefly while they drill into the bone itself but it is not crippling pain. It is the imagination of it that is more frightening than the reality. Some have suggested Entonox, (I don't know what it is called in the 'States) Nitrous Oxide and Oxygen mix. Laughing gas. Gas-and-air. It'll take the edge off but without the hangover of taking a benzodiazepine or, worse still, a G.A. as you won't be allowed to drive after either of those or, if you do, you probably won't be insured because you'll be driving contrary to medical advice. In the UK that's also a criminal offence; driving while uninsured and unfit through drink or drugs.

I agree with the comments that the anticipation is much worse than the procedure I had local anesthesia and as has been stated it was over in probably one minute I had no pain and after having it certainly I'm not worried to have it again

They used versed and fentynal. No problems at all.

Johne1
Johne1 in reply to Cllsller

Wow. Those sound like overkill, according to what I just read on Versed.

Cllsller
Cllsller in reply to Johne1

I was awake; didn’t feel a thing. And I had no say in the procedure.

Johne1
Johne1 in reply to Cllsller

I’m happy for you. Just a bit freaked out they used such potent drugs on you.

Can't remember which, but I had the procedure twice with absolutely no pain at the time, just a bit of tenderness next day.

I've had 3 with just lidocaine. Not exactly what I would recommend to do as a fun outing, but for me, there was only a few seconds of pain when they stuck the first bit of lidocaine in and when sucked the marrow out. The only thing that was unnerving was the sound of the drill they used last time. I walked out of the hospital and flew home the same day all 3 times. I know some people had a very bad experience, but keep in mind it's not unlikely it won't be a big deal for you either.

I have had 3. First, no meds except local. It hurt, and I have a high pain tolerance. Second time they gave me a couple of pills that were supposed to take the edge off. They kicked on on the drive home. Again, it hurt. Third time I asked for sedation. Went to the hospital for this one and I figured it would be like what they do for a colonoscopy, but they just gave me two pills (cocktail) and it lessened the pain, but I was awake the whole time. This was the easiest, I felt the pain, but didn’t care! I wish they would use the same sedation that they use for colonoscopies! Go in and the next thing you know it is over!

Becky L USA

They took mine out of my shoulder and I did not require anything more than a local. They miss-diagnosed me and said I hade stage 2 lymphoma. Saw a second doctor who said I had 0-1 CLL. As far as I know they do not need to do a Bone Marrow test for Luekemia....but hey, I have been wrong before.

Nothing to worry about!

Barger1951

Hi..So far I’ve had 3 of them with only skin numbing before and even though they are uncomfortable at best they were tolerable . Keep your mind positive and that should help. Good luck

I have had 4 bone marrow biopsies, the first 3 were with a local an aesthetic and the 4th was with sedation. The first was uncomfortable but the pain was manageable. The second and third were extremely painful. I actually was in a full sweat when done. But for the fourth, with sedation it was a piece of cake. While I was awake, never felt a thing!! It was great, and I was not very sore afterwards. The only downside is you need to have someone there to drive you home. They do not let you leave by yourself after a procedure with sedation.

I’m on my 3rd BMB soon. First time just the numbing at the site 2nd time I took high mg of ATIVAN. 45 min before My next one will be a repeat of last time

If I had a choice of the IV sedation ... I CERTAINLY would go with that. I would prefer not to HEAR or FEEL. anyway

Everyone is different

Best to you

Catnap7

Hello napa

I had my BMB with local shots. I had choice of local or operating room anesthesia. Operating room anesthesia would have required 2 month wait to schedule operating room. I felt a little pressure, that was it. It was over in about 5 minutes. It sounds a lot worse than it is. I told my GP who did BMB that "if that was the worse thing to happen to me that day, I had it made". GP did tell me that bone marrow does not contain nerves. Blessings.

I've had 2 and they're very painful. Of course that could be because I have a slipped disc and scolosis to add to the dimension of it all. At one point my back was broken and I didn't even know it. I have a very high threshold for pain for what I've been through. It depends on how sensitive you are to pain and any other underlying issues that may contribute imo. I asked for ativan for anxiety the 2nd time. That helped! I didn't have an option so consider yourself blessed. I would take iv sedation any day over the local. For me it was very painful I don't think the doctor was doing it right. I wish you the best with minimum pain.

Walk in the park, well that's I what I did after having it done.

As you can't sleep on that side it's worth taking a couple of painkillers before bed, so you don't wake up if you roll on to that side in the night

Complete depends on the doctors skill. I had a local and it felt like a tugging only. But I’ve had friends who thought it was awful.

I've had 6, will have another next month.The skill of the person doing the biopsy can have impact in amount of pain. A "Newby" will try to hard to not hurt you, and actually cause more pain. A skilled, experienced person, goes quick and without doubt, and less pain. I just think to myself,its gonna be over soon, but I have high pain tolerance. I would not worry about it, you will be fine, it's doable. The thickness of the Marrow can contribute to pain, ie..Marrow is full of bad stuff, will be thick and hard to draw out. I've had sedation for 1st couple of them, the sedation didn't kick in on the 1st one till an hour afterwards for me. The last several I've let newbies do their 1st one on me, and no sedation. Don't enjoy it, but don't fear it.

More of the same. I have had 2, both by MD hemoncs, both with local only. First was no problem, second was awful. This should be of no help at all to you, except perhaps you might insist it be done by someone with a reputation for painlessness.

Regarding treatment decisions, how handicapped is the doctor if you refuse a bone marrow biopsy? Do the results REALLY have much bearing on the treatment choices? Are we accepting that this is needed, but in truth, treatment decisions will be the same either way?

When they look at the bone marrow under a microscope, they can say, "Aha. It's the stem cells." or "Aha. 60% of your marrow is affected by cll." But perhaps your blood tests alone will show them what treatment is needed?

My hematologist wants me to do a CT scan in April. I am watch and wait with dropping platelets. No swollen lymph nodes or other symptoms yet. So why do the CT scan? Is that more for the peace of mind of the doctor then for me? The same question with the bone marrow biopsy. Don't blood tests show enough of what is going on that the biopsy is not truly necessary?

I think you are right to ask questions. The only reason I had a bone marrow biopsy was it was required for a clinical trial. Maybe you should ask your doc what they expect to learn from it and how it would impact your treatment choices. Same with CT scan. It’s good to ask questions about how the info would impact treatment decisions. I needed them because I did have significant lymph node involvement and I think they also wanted baseline measurements of my spleen.

SofiaDeo
SofiaDeo in reply to davidgrush

Davidgrush, you can have internal large lymph nodes that are beginning to compromise other organs, and can affect your risk for TLS (tumor lysis syndrome) at treatment initiation. It certainly was the case for me, By bloodwork alone I appear Medium Risk but the CT showed large internal nodes so actually High Risk. And even with days of aggressive hydration therapy, my BUN jumped up & I hate to think how I would have stressed my kidneys had I not been treated as high risk. I think it's a smart move to let your docs have a baseline CT. Re:BMB, well, the degree of marrow infiltration, etc. can help determine the need for treatment:communityview.lls.org/artic...

In my particular case, even though my total WBC was only 50K at diagnosis & absolute lymph counts & percentages not really high, my first BMB showed my marrow was almost completely white/infiltrated. I sought treatment sooner rather than later at the docs urging (I didn't need much urging after getting those results!) Even with highly infiltrated marrow, I manage to have stable-ish platelet, neutrophil & RBC parameters when in remission & during treatments that aren't highly marrow suppressing, to the extent that they are often normal. I wonder if I had waited & let the CLL take over my marrow completely, if I would be able to say the same today/still be alive. If I had waited until my marrow failed, as indicated by falling platelets, neutrophils, RBC parameters, etc. I might not have recovered. And my FISH also showed a high percentage of cells affected with 17p, 13q, etc on both alleles.... so if your bloodwork is showing signs of highly aggressive disease, your doc may want further testing to confirm severity & extent. Out side of studies, my docs only asked for repeat BMB at remission, to confirm it. And if I hadn't had the recent study CT to show internal nodes, I would have asked for one before beginning Venclexta treatment 2 weeks ago, to assess TLS risk.

davidgrush
davidgrush in reply to SofiaDeo

Sofia. Your answer was very helpful. You made this statement: "In my particular case, even though my total WBC was only 50K at diagnosis & absolute lymph counts & percentages not really high, my first BMB showed my marrow was almost completely white/infiltrated." This was one of the things I was specifically wondering about. Thank you so much. All of your comment was really on-target. Best wishes. David

SofiaDeo
SofiaDeo in reply to davidgrush

Yes, I was highly symptomatic with fatigue/inability to concentrate. I had had a tooth infection the previous summer, WBC was like 10-11K then. I went into doc's that Dec thinking I had another tooth infection....and my WBC had jumped to 50K in those few months. Platelets, RBC parameters, serum proteins, all normal. That WBC jump (mostly lymphocytes), my symptoms, and really abnormal cell appearance on the smear had the hem-onc wanting BMB. For some reason, insurance would pay for that but not FISH,etc.

I had the IV and had no problems at all, pretty much pain free afterwards.😀

Take the local ! Two minutes. A slight pressure against the back.

I’ve had 3 local and 4 with IV sedation. Take the IV sedation.

My question to everyone that has them as what is the point in them anymore? Unless you’re looking for MRD? I’ve had CLL since 2005 I have never had a bone marrow biopsy I know when my mom had CLL in 1984 they used to do them because they didn’t know how to diagnose it in the blood but I don’t understand the point for them anymore. What are they changing in the outcome? Or in the treatment plan? Best wishes. Janet

AussieNeil
AussieNeilAdministrator in reply to narl

Exactly Janet!

Nowadays, the only reason for a Bone Marrow Biopsy should be as when it's a requirement for a clinical trial, or where a pathologist can only determine why your blood test results are strange by examining the blood cell development process in a bone marrow sample.

Neil

narl
narl in reply to AussieNeil

I have to admit here in the U.S. I’ve always just felt that it’s another moneymaker for the hospital. I feel it’s just unneeded stress and possible complications for people who really don’t need more stress and complications. Janet

Yes. Please check back at my similar comment about 7 comments before this one.

After three excruciating Bone Marrow Biopsies all of which included a so called "local anesthetic," I am with Neil and Janet on this one. I refused the last one I was offered unless I could receive general anesthetic. General anesthetic was not an option here in Canada. That was almost 2 years ago and I am doing much better than expected by my medical team.

KatieBlue
KatieBlue in reply to narl

Well, my bloodwork on the morning of my bone marrow biopsy showed stage 0 CLL, with dropping platelets.

My bone marrow biopsy showed 90% CLL, stage 4.

Resulted in big changes to outcome and treatment plan for me.

narl
narl in reply to KatieBlue

Wow, I had never heard of that before with nothing showing in the bloodwork other than dropping platelets in stage four. It looks like it worked out for you then as it would change the outcome for sure.

KatieBlue
KatieBlue in reply to narl

Considering they would comment about my great labs and compare them with patients whose counts were in the 100s of thousands who didn’t need treatment or how I would likely never need treatment and things like how important it was to remember I was stage 0.... yeah, I’d say it caught them off guard a bit too.

narl
narl in reply to KatieBlue

Yeah I was one of those people who had it for 14 Years & my white count was 300,000 actually a little over but I still felt fine. I wonder if what happened to you happens very often? I sure never heard of it before I’ve been reading about CLL for almost 40 years because my mom had it too and two of her neighbors had it also.

KatieBlue
KatieBlue in reply to narl

On the day of my bone marrow biopsy, my WBC was 26,400 and my lymphocytes were 20,330.

I didn’t feel particularly well, but I didn’t have visible lymph nodes and no night sweats. Even after the BMB, my doctor was reluctant to ascribe my fatigue to the CLL. (Which seems to be why one of the nurses would remind me of patients like you who had much worse counts, and who didn’t need treatment, and mine barely qualified me to be seen, lol.)

I guess because they were telling me about ITP when deciding to schedule a bone marrow biopsy, I think that was their thoughts about what was happening, especially since my lab work was so good.

I don’t know how often it happens. I just recall when my doctor told me, she said if it had been 40 years ago, my CLL likely wouldn’t have been discovered until I was very ill and hospitalized due to it.

bkoffman
bkoffmanCLL CURE Hero

An experienced technician is critical. Never had sedation in a dozen or so. They are unpleasant for sure but not terrible.

I have had one BMB with sedation and one without. Definitely preferred sedation.

Thank very much for all of your valuable response to my BMB question. I will have mine this week at Mayo, have been on W and W for about 8 years. Thank you again. Napa

love23
love23 in reply to napa

8 years is a long time! That’s amazing! I hope you get get results.

I’ve had 4. The first with sedation, and the other 3 I just took a sedative prior to having them done to reduce my anxiety. The idea of what will take place is definitely the worst part for me. There is some pressure and a little pain, but I found it bearable. It’s a fairly quick procedure also. They’ve really come a long way since they first started doing them.

I would recommend asking your doctor to give you something to help you relax before. I pray it’s a smooth and quick process! Best of luck!

I had IV sedation. I felt nothing. First a radiologist marked where to make incision and drill, then a IV sedation was administered, before I knew it I was done. Piece of cake.

Hi Napa! I had biopsy from the sternum 10 years ago. They made infiltration with Lidocaine ( I felt it hot but then quickly numbed the area). I didn’t feel anything during the procedure, although I was warned that bone marrow aspiration could be painful. After that few hours later I had discomfort when moving upper limbs for 2 nights ( day was ok). So in total it was ok. Pain perception depends on you mental status, so it’s up to you to decide. Keep well ❤️ Temida

HopeME
HopeME in reply to Temida

Why did you have the procedure on the sternum as opposed to the tail bone?

Temida
Temida in reply to HopeME

Have no idea! 😁 It was in Bulgaria

I have had two biopsies don, both with local anesthetic. The first one was when I first got diagnosed and the CLL was in its early stages. It wasn't an experience I'd suggest but it really wasn't that bad either. Uncomfortable and maybe a couple of stings. The second one was just 6 months ago right before I had to start treatment. This one was not fun. It was actually painful. The lady who performed the biopsy told me that that was because of the state of my marrow because of the advancement of the CLL. Whether that is true or not I don't know but from my experience I would say no problem when it is in the early stages and knock me out if it is to the point where you are about to start treatment. Just make sure you have someone to drive you home because if you don't most, if not all, will only give you a local. Good luck!

napa
napa in reply to Geraldb

Thank you all again for your feedback, had mine BMB this past Thursday at Mayo with LA, went better than expected, hope next one I will surely have some day goes as well. Yes, painful, but am ok I decided to do it with LA.

My father had one recently not really painful at all he just had some local freezing. He was suprised how simple of a procedure it is and the stress worry about it was really worse.

I was pretty robust when it came to procedures but since ICU, my body goes into disproportionate shock ‘syndrome’ - I’ve had 2 BMB’s - the first was fine, the second was appalling and lasted nearly 3/4hr. I hasten to add that I think the nurse administering it - got it wrong on that occasion. This time, ( 2wks time) I’ve elected for local anaesthetic & gas & air. I requested a back up plan too inc. horse/elephant tranquilizer if necessary.

CLLerinOz
CLLerinOzVolunteer

Hi Napa,

Have you had your BMB yet? If you have, I hope it went well.

One of the big problems we have with bone marrow aspirations and biopsies (BMABs) is that there is no standardised approach to their management. Our anecdotal reports on this forum bear witness to the fact that the patient experience with BMABs varies enormously, not just from country to country but from setting to setting and person to person.

What some people can cope with without it causing them undue anxiety or discomfort can result in varying degrees of trauma and pain in others. It seems that 'one size' doesn't fit all but evidence is mounting that the experience of the person taking the biopsy sample and the type of premedication administered can improve the patient experience, make it easier for the physician to get a good quality sample and increase the likelihood that patients will not feel anxious should they require a further BMAB at some stage in the future.

This abstract of a randomised study to explore pain management for BMABs was published in Feb 2020.

ncbi.nlm.nih.gov/pmc/articl...

In its introduction, the study authors observe that :

"There is no clear evidence indicating a single effective method of premedication before BMAB in adults, and no formal guidelines for using analgesia/anxiolysis in this setting."

Patients in this study were randomised to either:

A. premedication of a local infiltration anesthesia (LIA) with lidocaine plus a placebo or

B. premedication with LIA plus opioid + benzodiazepine agents, Fentanyl Citrate and Midazolam.

The same skilled practitioner took all samples.

The study's primary endpoint was reached: 'the degree of pain reduction in sedoanalgesia patients compared to those receiving standard premedication differed significantly.

The study identified a couple of key factors that can lead to patient pain:

Anticipatory Fear:

Anticipatory fear of a painful procedure such as BMAB can substantially increase the perception of pain and play a key role in the discomfort felt by the patient, creating a general state of anxiety that can negatively affect quality of life.

Physician Experience:

Experience in performing a BMAB is associated with a lower level of pain because a skilled physician can notably reduce the length of the procedure and minimize the need for a repeat biopsy

"Patients receiving premedication with benzodiazepines tend to be more willing to undergo other BMABs than those undergoing LIA alone [20], suggesting that retrograde amnesia induced by the sedative component of the premedication probably plays a major role in reducing pain and improving comfort of the procedure as the analgesia component. Our results show that premedication with oral midazolam plus transmucosal fentanyl citrate can effectively reduce both pain and pain-recall anxiety without major adverse events in an outpatient setting. Furthermore, allowing patients to choose whether to add sedoanalgesia to standard LIA helps them to go through a BMAB with greater serenity and minor discomfort, both of which are important for the diagnosis and management of hematological malignancies. Cost-effectiveness analysis showed that this procedure of great advantage for patient quality of life, is reasonably affordable for the majority of hospitals in Europe. In conclusion, physicians must not deny patients the opportunity for sedation as it is impossible to estimate the degree of pain produced by a procedure involving non sedated tissue such as bone or bone marrow."

Meanwhile, work continues on liquid biopsies which I wrote about in this post last year: healthunlocked.com/cllsuppo...

AussieNeil has also posted some hints about other practical things that can help to reduce the distress of a BMAB: healthunlocked.com/cllsuppo...

napa
napa in reply to CLLerinOz

Thank you for all of your info, yes, I have had it without sedation and it went well, painful but smoothly, the professional talked me through all of it very well, joked that it was his second, lol, when likely it was his 2,000th, thank you again.

CLLerinOz
CLLerinOzVolunteer in reply to napa

Good to hear it went well, Napa, although I'm sorry that you experienced that pain.

According to the study I quoted, the beauty of sedation is that it can 'reduce both pain and pain-recall anxiety'. It's good that you had an experienced professional looking after you which helped and that enough time has passed for you to get over the pain you felt.

I hope that, in future, standardised pain management protocols for BMABs will be brought in to ensure that everyone has as good an experience as possible.

Glad it went well Napa and as always great posts on here. I’ve got my first BMB next Tuesday and certainly not looking forward to it but hey ho!

CLLerinOz
CLLerinOzVolunteer in reply to Salohcin

Hope all goes smoothly for you

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