Bone Marrow Biopsy Options?

[CLLBGone]

It seems a bone marry biopsy is the "gold standard" for determining RMD. Are there any less invasive (painful) options to a BMB? Thanks

[CLLBGone]

ooops not marry -- let's try marrow ----

[cllady01 Former Volunteer in reply to CLLBGone]

If you look at the bottom of your above post (this a a reply, here not a post) you will see the word "More v"---click on that and then "edit"---to make any corrections in your post.

[CLLBGone in reply to cllady01]

Ahhhh haaaaaa .. thanks .... I wondered where the edit button was ..... now I know

[GMa27]

BMB is the best way. It's so important to have that test for 💯% answers.

Definitely understand people wanting to avoid it. Luckily all 3 of my BMB- felt nothing. 💕

[CLLBGone in reply to GMa27]

Thanks ..... It's most likely not going to happen until early next year. Thanks for the encouragement.

[Hidden]

i felt very little on my 2

[CLLBGone in reply to Hidden]

Thanks; glad you did well .... I guess if they give me a leather strap to bite down on, I'll be ok.

[WalkTheLine in reply to CLLBGone]

Gas and air just like you were having a baby. Really though, it isn’t that bad. Nothing to get upset about.

[CLLBGone in reply to WalkTheLine]

Cool ...... Thanks

[annmcgowan]

Hi it is the best way. I didn’t feel anything when I had mine.

Ann

[CLLBGone in reply to annmcgowan]

Thanks .... I hope my experience mirrors yours

[lankisterguy Volunteer]

Since I have been near or at U-MRD-4 for almost four years, I have discussed this with Dr. Furman and read some papers. Running the test on a blood sample is comparable some times and in other cases slightly less accurate than on a bone marrow aspirate. So for routine monitoring we are using blood, and only when a major decision is to be made, and the blood shows U-MRD-4 do we also run one on the aspirate from a bone marrow biopsy.

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See: journals.lww.com/hemasphere...

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SNIP: MRD detection is performed using peripheral blood (PB) or bone marrow aspirate (BM). A compartment effect has been demonstrated with some substances being more effective in PB than in the BM. ... The widespread use of this standardized assay in prospective CLL trials has led to highly comparable MRD results.

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Here is another paper discussing when to use PB (blood) and BM (marrow)

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

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SNIP: Since some drugs preferentially kill CLL cells in the PB showing a lower effect on the other compartments, the first step should be the MRD evaluation by FCM or other assays in the PB compartment, always expanding the analysis to the BM if PB MRD is negative.

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Len

[CLLBGone in reply to lankisterguy]

Great stuff .....thanks for the info and links. The procedure most likely won't happen until early next year when I complete my O&V trial.

[BeckyLUSA]

Not trying to be a negative nelly, but not everyone has such positive experiences with BMBs. Before you have one read all the posts on BMB’s, gauge your own pain tolerance level, ask your doctor and nurse what they would do and see exactly what options you have for mitigating the pain. Then do what you think is best for you based on your available options. I have had 3. 1 with nothing, 1 with an anti anxiety drug and one with a drug combo in the hospital. Even the one in the hospital was fairly uncomfortable, but better than the previous 2.

Don’t know why they can’t just use the stuff they use for Colonoscopies!

Seriously, read everything available and make your own informed decision. You have time to do it!

BeckyL USA

[CLLBGone in reply to BeckyLUSA]

Thanks ... That's eggsackly what I'm doing, just trying to get as much info as I can. Part of the agreement I signed when the 0&V trial accepted me was that I would undergo a BMB when I completed the trial. ......I guess, just another landmark on this CLL road back to health

[jj401]

I have only had 1 bmb and the dr used lidocaine injections only after they gave me iv propofol. I was sweating it but this way was a breeze.

[CLLBGone in reply to jj401]

Wow ...... an easy ride for sure .... that propofol is something else.

[EKCekc in reply to CLLBGone]

Propofol: "Milk of Amnesia." (Just, make sure someone is watching vital signs throughout, so as not to end up like Michael Jackson.)

[CLLBGone in reply to EKCekc]

Yuhp ......that was supposedly one of MJ's favorites

[eric72]

I understand many wishing for an alternative to BMB, but I have had 4 now and never felt one of them.

[CLLBGone in reply to eric72]

Four ...... glad it went well.

[LynnB1947]

I know the responses on the BMBs are all over the place. I've had 1 without & 2 with sedation. I think the sedation was propofol & I took a wonderful nap and woke up none the less for wear. So any BMBs in my future at M D Anderson will continue to be under sedation. LynnB

[CLLBGone in reply to LynnB1947]

Thanks .... I've had propofol for colonoscopy and did well on that sedation; good to know.

[GPip]

I think as others have said everyone’s experience is very different. I’ve had three now and requested gas and air for the third one after previous experiences , and it was much more comfortable for me.

[CLLBGone in reply to GPip]

Thanks .... I'm not a fan of gas, the few times I've had it at the dentist office, it's taken me to places I didn't necessarily want to go to --- propofol on the other hand, has worked well for me in the past. At some point I'll discuss the procedure with my care team and figured before I do I'd get as much info as I can.

[Lily_Pad_Master]

Work with your CLL specialist / oncologist to arrange for light IV sedation. Be sure to emphasize *IV* sedation or they will just give you a pill that will do nothing for the pain, assuming the pain is the issue. This approach makes pain a non-issue (for me, anyway).

[CLLBGone in reply to Lily_Pad_Master]

Thanks .... great idea; will do.

[Lily_Pad_Master in reply to CLLBGone]

Oh, and I share what I was told by the part of my care team that does the BMBs: “Every person is different and every person’s various BMBs can be very different from one another. What was awful one time can be simple the next, and vice versus.” Knowing that I’ll be under enough to not notice/remember the pain, I can honestly say I never even give them a second thought any longer.

[CLLBGone in reply to Lily_Pad_Master]

True enough ..... I head had a ton of root canal horror stories .... went in for mine, and it wasn't all that bad --- like many medical procedures, so much depends on the person receiving treatment and their state of mind, the person doing the procedure, and if, what and how sedation is administered.

[DavidDay22]

My first BMB I went without anesthesia, and that hurt, my second I asked for anesthesia, and it was a breeze.

[CLLBGone in reply to DavidDay22]

Thanks .... from all reports it sounds like anesthesia is the way to go

[SERVrider]

Mine was done at the St Luke's Cancer Centre by two lovely nurse practitioners. With Lidocaine, the initial phase was painless and they did the aspiration or taking the liquid part of the marrow using a needle and syringe. The next phase, however, was the nasty bit where a hand-tap is used to bore into the bone. This is a tubular drill-bit with a solid bar trochea in it and that really hurt. I used some "robust words" but the nurses said they had heard far worse. The solid rod is then removed and a tubular insert with a semicircular cutter on the bottom is inserted to take the marrow sample which is worm-like, about 1.5mm in diameter and 25mm long. That was painless. The tap was removed, a dressing stuck on and out I walked. Yes, the boring part did hurt as the tap is pushed home to keep the teeth cutting but it is very transient, no more than a minute, and I am sure gas-and-air would mitigate that if one felt nervous. The whole process took no more than 15 minutes and I suffered no ill-effects afterwards. Do not be frightened at the prospect of the biopsy it's not too bad.

[CLLBGone in reply to SERVrider]

Thanks for the detailed report -- that procedure reminds of trying to hang shelves on a cement block wall using hand tools.

[SERVrider in reply to CLLBGone]

Probably a good analogy except no hammering is involved! I remember my dad using a triangular punch to "bore" holes in brick/block walls, then pack them with Philiplug, which was asbestos fibre, gypsum powder and water with a "Rawlplug" which was some sort of wood fibre. Once the gypsum set and if it had bonded into the substrate, you could screw into the plug. Today it is the cordless hammer drill, TCT drill-bit, plastic plug, job done. As kids we moulded worms of asbestos fibre and gypsum with water for my dad to pack into the holes. My parents both smoked at home and in the car - my brother and I must have been twenty a day passive smokers. In Britain during the war, everyone was issued with a gas mask or respirator, military or civilian including children. The filter cartridges were packed with asbestos fibre as the filtering medium. We knew how to live dangerously!

[CLLBGone in reply to SERVrider]

Wow great story.

[clifflee]

Hi I had one couple of years ago and it sounds much worse than it is, I felt nothing more than a little pushing and it was done in the consulting room. Good luck and don’t worry 😉

[CLLBGone in reply to clifflee]

Thanks ...... I should probably change my handle from CLLBGone to WorryBGone .. glad it went smoothly for you

[Big_Dee]

Hello CLLBGone

My BMB was done by my GP with local shots. It was so easy, I told my doctor "if that is the worse thing to happen to me today, I have it made".

[CLLBGone in reply to Big_Dee]

Thanks ..... I've used that same expression "if that's the worst that happened to me today, I'm in good shape" quite often

[newyork8]

I've had about 4. I have tough bones so they worked on me for a while and had to bring in a big dude to help. I take a small Valium now before which is helpful. The thought of it is much worse than reality. Good luck.

[CLLBGone in reply to newyork8]

Thanks .... True enough .... It often seems that thinking about some of these medical procedures is worse than the actual procedure

[lexie]

If you opt for the sedative instead of just the lidocaine you will need to be accompanied by a driver. I drove myself which is 3 1/2 hours each way so it was lidocaine only for me. I felt pressure but not pain.

[CLLBGone in reply to lexie]

Thanks ..... I've had propofol before (colonoscopy and port installation) and the first thing they told me during the initial prep visit prior to the procedure was that I'd need someone to drive me home. A few friends who've had it done with local numbing lidocaine, described it exactly as you did "pressure"

[CLLBGone]

I just want to thank everyone for the insight and encouragement. This support group is just that --- support --- along with solid information which as we have discovered can be difficult to sort out on the ole innerned. Wishing good health to all in this time of Livin La Covida Loca

[wizzard166]

I don't know what RMD is, but I just had a Bone Marrow Biopsy in February for CLL. Bone Marrow Biopsy is normally done just before starting treatment for CLL. It is not needed to diagnose CLL because the cancerous cells are mostly in the blood, so regular blood tests can diagnose this. The Bone Marrow biopsy can help determine the progression of the disease, and it also can help the doctors decide which type of treatment to use. It can also help doctors understand better some other abnormal blood test results. The bone marrow biopsy can also give them a better idea about your prognosis.

One of the things with a bone marrow biopsy that helps has to do with your age. The older you are the more fat deposits there are in the bone marrow. For example a 70 year old should have about 70% fat and 30% cells; whereas a 30 year old should have 30% fat and 70% cells. This is not a great scientific description of what they call Cellularity in bone marrow biopsy analysis, but gives you a decent idea. If your Cellularity is greater than it should be based on your age, it gives them a good idea of how progressed your leukemia is.

As far as the discomfort from the procedure, I tolerated it pretty well. I could go into a pretty good step by step description of what it was like, but I probably shouldnt do it in a post read by anybody. I'd be happy to give that description to anyone who used this site to private contace me. If the administrators feel a good description on a public post is fine, I'd be happy to do that too.

[CLLBGone in reply to wizzard166]

RMD -- residual minimal disease -- is what I believe it means. Basically can't be detected with current testing -- someone please correct me if I'm wrong about that definition.

Minimal residual disease (MRD) refers to the small number of cancer cells that remain in the body after treatment. The number of remaining cells may be so small that they do not cause any physical signs or symptoms and often cannot even be detected through traditional methods, such as viewing cells under a microscope and/or by tracking abnormal serum proteins in the blood. An MRD positive test result means that residual (remaining) disease was detected. A negative result means that residual disease was not detected.

[AussieNeil Partner Administrator in reply to CLLBGone]

U-MRD (Undetectable Minimal Residual Disease) is the new terminology. See healthunlocked.com/cllsuppo...

and

healthunlocked.com/cllsuppo...

Neil

[CLLBGone in reply to AussieNeil]

Got it .... Thanks ..... Makes more sense adding the U

[ZeeZeeC]

Everyone responds differently to pain & discomfort. Mine wasn't great (actually worse than I thought it would be) but I imagine there are many worse things to go through..... that said, if I have to have another down the road, I asked if I could take Valium or something beforehand to help w anxiety. I was told that I definitely could.

I just had my first colonoscopy in early March and let me tell you.... if propofol is an option for a BMB, I would jump on that without thinking twice!

Be well!

[CLLBGone in reply to ZeeZeeC]

Thanks and wishing you good health. I agree with you about propofol; I've had it in the past ..... no pain and no memory

[wizzard166 in reply to ZeeZeeC]

Yes it definitely is not fun; however, it wasnt the worst pain I've had in my life. It is really unpleasent but not so bad I couldnt get through it without being knocked out. I actually would pick a bone marrow biopsy over getting drilled by a dentist.

[CLLBGone in reply to wizzard166]

Thanks .... The dental chair is not among my top ten places I'd like to be either.

[Sojomama13]

Hi,

I had a Bone Marrow Biopsy BMB and going in I was scared to death. I was offered an anti anxiety medication and I took it. I was given a few shots of lidocaine to numb the area. The lidocaine did burn when going in, but was really not bad at all. I found the procedure went very smoothly and because of the lidocaine, I didn’t feel anything. The next couple of days I felt some discomfort, not pain.

I am currently on treatment and there was an optional 4 month BMB and I agreed to do it. Clearly for me, it wasn’t that bad. It was not pleasant, but not horrible.

All the best,

Sandy

[CLLBGone in reply to Sojomama13]

Thanks ..... That seems to be a common experience ..... not pleasent and not horrible.

[halfdiamond]

I refused to participate in this test as they refused to allow me any pain killer or put me out. I don't regret it.

[CLLBGone in reply to halfdiamond]

Thanks ..... being that I've been in this O&V trial since Oct 2019 and things have been uneventful (except for obtaining very good CBC numbers and feeling like a 20 year old) Id like to hold up my end of the agreement by doing the BMB at the conclusion of the trial when asked. I can understand a ruluctance to do this test with zero pain management.

[Mango1957]

It is my understanding that, at one time, they did not use anesthesia for bone marrow biopsies. That sounds unnecessarily barbaric to me! Thankfully, that was not the case when I had mine last year. I was adequately anesthetized (awake but in sort of a twilight state). I felt nothing during the procedure, and had no pain afterwards. If the physician doesn't plan to use anesthesia, I would suggest finding a different doctor to perform the procedure. (Note: I am in the U.S., and my sister is a nurse. She said anesthesia is commonly used these days).

[Newdawn Administrator in reply to Mango1957]

I didn’t have any kind of sedation and it was made clear it was a bit of a nuisance if I insisted on it requiring theatre time and a much longer stay. No gas and air provided either or even a Valium beforehand. As it turned out the senior nurse did it without ceremony in a side room on the day unit and whilst it wasn’t pleasant, I’ve certainly had worse procedures. The Consultant told me she was much better at it than him as she does loads.

The anticipation was much worse than the reality.

Newdawn

[CLLBGone in reply to Mango1957]

Thanks ..... That's good to know

[CLLBGone in reply to Mango1957]

Thanks

[DelrayDave]

I have had 2. The first was no problem. The second was very painful. It depends sometimes on who does it. No sedation either time.

[CLLBGone in reply to DelrayDave]

Thanks ..... I agree; whoever drives that truck has a lot to do with how smoothly things go.

[Smakwater]

CLLBGone,

I believe that it is an individual experience. When I had my first BNB I had sciatica, I was not given a numbing agent, and the doctor treated me as if I was a cadaver in a biology lesson, "Not Fun".

The last two were hardly of notice, and I rode my bike 20 plus miles afterward without any soreness. The doctor that performed these two BNB's briefed me prior to the procedure, spoke to me during it, and treated the area as if it was being prepared for a deep massage.

I would propose discussing the process with the doctor prior to the BNB, and consider taking a mild calming agent. Be convinced at a minimum that the extraction site will be numbed at all levels and not just topical.

I do not believe that it is suppose to be as traumatic as we often read about. However, there are no doubt those who have the "Bad Experiences"

I agree with wizard's analogy about being drilled by the dentist.

JM

[CLLBGone in reply to Smakwater]

Thanks ...... good advice all the way around