Hope the following might help anyone faced with a Bone Marrow Exam for the first time.
Just had my first one recently as part of the baseline tests for the CLL10 "FLAIR" trial, I've signed up to.
Like some of you I've heard descriptions in the past of Bone Marrow Biopsies BMB that were difficult experiences for the patient.
So decided beforehand that I wouldn't do too much reading & research, but hope for a better experience.
Anyhow the following describes my own experience and understanding, and all turned out much simpler and relaxing than I'd expected, from the patients viewpoint.
Please correct me here on any horrible errors.
First thing I didn't understand was that there are two kinds of bone marrow sample; liquid and solid.
- The liquid is a "Bone Marrow Aspiration"
- The solid a "Bone Marrow Biopsy"
The two tests together form an "Exam".
Different medical conditions require one or the other sample, or both the tests. CLL requires both.
Now which bone is used ? I wasn't sure of all the options there before the test, but turns out the Pelvis is now the bone of choice, with samples taken from just below your waist from the back.
Feel around the back of your waist and you can feel the edge of the Pelvis on each side.
So you simply lie on your side with knees part raised to the chest, and don't get to see the needles (unless you really wanted).
I did ask for a pillow between the knees for extra comfort (wondering of the old CLL leg cramps might cause me a problem at a bad moment).
You are wondering how painful it is then ?
Don't think of the word pain, its more a gentle warming/tickling sensation for short periods of time.
Now obviously you don't want to move around during the test. I've heard in the past of people being braced against a wall.
So I was surprised to have a very kind nurse apply some gentle pressure to my knees, also at the same time hold my hand when I asked, just to help me keep still (no great force involved on the knees, just gentle pressure).
We are all used to the call of "Sharp Scratch" before the blood test needles, so what do they say before the bone marrow ?
Well - its not like that. They very cleverly distract you with genuinely interesting conversation, so no time nor need to think about the needles.
In my case several attempts at the liquid Aspirate drew a blank. That is referred to as a "Dry Tap".
Understand that can happen in CLL, and I'm sure it wasn't to do with the excellent team performing the test.
The Bone Marrow Biopsy for the solid sample yielded a good result, about 1.5 inches long, 3mm wide and pink and white in colour (The only bit you get to see if you want to).
Tea and biscuits followed the test - what more could you ask for ?
The "After results" were just two small red dots, covered with a small stick on bandage to be left on for 24 hours (great excuse for a lunch time soak in the bath the next day)
So what about the pain afterwards. Again "pain" is not the right word. I can only describe it as a mild "Bone ache" that wears off over about 5 days in my case, and didn't prevent me, or put me off from doing anything.
I did remove my belt on the way home to make the drive more comfortable (about an hour with the traffic at the moment).
If anyone cares to share your experiences of Bone Marrow Exams that would be interesting.
I'm concious of SLL patients who need more of them of course because in that case the CLL hides in the bone marrow and isn't detectable in the blood stream with normal basic blood tests.
Other tests for the "FLAIR" trial have included echo cardiogram, CT scan, and numerous blood samples (all taken together in one go).
So all complete now, good to go, and waiting to be randomised by the central computer in Leeds into one of the two arms of the FLAIR trial, FCR or IR. Glad I'm not choosing in my case.
Kind regards and thank-you for all your excellent posts.
Ernest
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Before the computer does its work, patients are subdivided into groups, so each group achieves the 50:50 split. Would be interesting to know more about the groups and how many in total, I'm guessing age ranges, and gender, perhaps more.
I did wonder a long time ago if the trial could possibly be made blind but correctly guessed not possible, so you do get to find out before it all starts.
Interestingly if it is IR then I understand the Ibrutinib starts a day before the first Rituximab infusion.
The thing I am sure of is getting the Rituximab, as its in both "arms" of the trial (FCR vs IR). In my case with a high ALC count the plan is to split it over over a couple of days which seems very sensible.
Thanks for explaining that, Ernest. It's good to know that it's not a "blind" trial. I was thinking that people need to know what meds they're having, as the possible side effects and complications will be different for the different treatments, and would need to be dealt with in different ways.
Have you been given a start date for your treatment?
Thanks for detailing your experience Ernest and reassuring those that have yet to undergo the experience. I've pinned your post and included links to a couple more posts concerning Bone Marrow Biopsies (BMB) below:
Had a BMB, no pain, no soreness, felt nothing except a pulling sensation. No anesthesia, and absolutely no problem with soreness or problems afterwards. They even had to go in again to get more bone.
Ahh, but none of the others were good enough to be awarded Pinning!
I'm still glad I had mine under light anaesthesia; didn't feel a thing, but I was a bit uncomfortable sitting for a while and didn't appreciate road bumps. It is definitely a procedure to have done where they do them regularly.
I had a very similar experience to Ernie at our DGH in Worcester . The Nurse specialist and HCA where brilliant . Certainly would not worry if I had to have another.
I live in the US and I had one a year ago. It was done as an out patient at the hospital. I got there in the morning. the nurses were so nice and very helpful. First they did a blood test. Then they took me to the operating room. put me out and then I woke up. It was very fast and I had no problems at all. They took me back to the room and they gave me lunch. It was very easy. I was a little sore in my back for awhile, but all in all, it was very easy. My doctor was happy with my results too.
I would like to testify to the value of human touch during bone marrow procedure - and other similar tests. For me holding the hand of the nurse on the first occasion, and my cousin on the second was very reassuring. For the second test (about a year after the first) I was more nervous, even though the first one had been as straightforward as others have recorded. I was very tense. The doctor reminded me to breathe - somehow when you tense you hold your breath - and just concentrating on breathing relieved all the tension.
Hi Ernest -Thanks. I am told I will need one of these at sometime in the future and I have heard horror stories. This is very re-assuring! However, I'm still not 100% sure that my experience will echo yours. Believe me, if I could opt to be put out, I would.
I'm sure it is a personal thing but for me the thought of a general anaesthetic, and the recovery afterwards would be more scary.
So think I would go for a local every time, given the choice (I'm thinking of other procedures as well).
Might be interesting to raise that as a general question, and see what people think. More and more ops these days seem to be offering the local option.
Key thing is probably to talk to your team about what you are thinking about beforehand. Before you know where you are it will probably be over, and you can be drinking tea.
Remember mine wasn't the best case, with several attempts at the liquid aspirate, and yet the test completion and after effects were still fine.
Thanks Ernie - a helpful and thoughtful post. I have had three all quite recently. Two were fine and very similar to your experience. The middle one was trickier - they had three attempts by two different registrars - and they seemed more distraught than me! It still wasn't painful at the time. The bone ache you describe lasted longer ( a couple of weeks). But it still wasn't disabling in any way. The whole thing lasts about twenty minutes...
Yes I'm sure (now with hindsight) it is harder for those performing the test than for the patient, and I was really impressed at how much thought and effort they put in to give the best patient experience.
I've no perception as to how long the test lasted as I was lost in conversation, and didn't check the time afterwards.
It is an odd sensation how the ache isn't at all disabling - I have had a lot of lower back trouble (good at the moment though with increased activity levels) and it didn't trigger any problem there.
Snowdropose, I don't know what the situation is in the UK in terms of whether the procedure varies at different centres, but I was lightly sedated for my BMB. In the USA, some places use a different instrument which is claimed to be better, so there may be other options to the one that Ernie describes. I suspect that if you are sedated, they are less gentle with you than if you area fully awake, so you might avoid the discomfort of the procedure but pay for it later. However, if you fit in the large proportion of the population that doesn't like having medical procedures done on them while they are fully aware of what's happening, then ask whether light sedation is available to you.
From all I've read, your best guarantee of a good experience is to have one done where they do them all the time...
"From all I've read, your best guarantee of a good experience is to have one done where they do them all the time........... " I think that's easier said than done. However, I think if I jump up and down enough, someone more experienced might be produced. When two junior doctors tried to cannulate me for a CT scan earlier this year, they missed completely and it was when the person, about to do the scan, tried to flush the cannula with saline that they realised, and my arm started to swell. The following day an anaesthetist , still wearing theatre scrubs, appeared on the ward and he got it right first time.
Thank you for your concern. I wish I wasn't such a wuss,
Thanks for the post. It was helpful in making me more relaxed for my first biopsy that happened a couple of days ago. Mine was no big deal. It was mostly a feeling of pressure and one brief moment of a bit pain that made me flinch but overall less painful than many dental procedures.
Thanks massively Ernest...the detail really helped me to understand and dispelled some fears. I haven't required one yet and don't relish the prospect but it's one of those procedures us CLL'ers see coming to a place near us soon!
I just wondered if a partner or friend would be permitted to be with you through it?
Good question - yes you were allowed to take in a friend/partner in with you, although in my case I thought (beforehand) it might not be a great experience for my partner, who was able to wait in comfort just outside the room, so all worked well (my choice). Tea and bics for all afterwards which was nice way to relax afterwards.
Hi Ernest and everyone who wants to know about bone marrow exams!,
Firstly - a massive thank you to Ernest for reassuring me with his wise words above before my first ever bone marrow exam a week ago.
Secondly - I echo everything Ernest said. I could not believe how fine the bone marrow exam was. I was really worried beforehand about the pain. And it was FINE!! Really. I've had teeth extracted that were more painful. Also it was over in I would say 5 minutes.
I asked to be knocked out and was assured there was no need. I got plenty of local anaesthetic which I was pleased about. Then the first part, I couldn't "feel" as such but I knew there was something going on; definitely it did not hurt. The doctor explained everything as she did it (which I assured her I would rather). Towards the end of the whole thing I could feel a sort of pressure as the needle was being drawn out but again, I wouldn't describe it as pain; more of a weird sensation which lasted probably 5 seconds max. The it was all done - I couldn't believe it! I will certainly not dread the next one half as much.
I was told I could take normal painkillers for the next few days if I needed them; I didn't need any (and I am not the sort of person to refuse medication if I think it might help me a bit!).
So I would definitely agree with Ernest in saying - do not worry. Perhaps years ago a bone marrow was a big deal, hence we get scared about it; but certainly my experience was not worth getting anxious about. Though as humans we will anyway, fear of the unknown etc!
Good luck to anyone having their bone marrow exam soon and I hope it goes as smoothly as mine did.
Now all I have to do is wait for the results.. Which of course I'm petrified about!!!
Thanks for posting this information. This test is one I have been worried about for a long time. Sounds like you had an excellent team and a real angel as a nurse.
Please let us all know how you are getting on and if you know which group you were put into for treatment?
Had my second bone marrow (post treatment this time) a couple of weeks ago now since finishing FCR in May. Still a bit sore from that. Had a great team again.
Still not 100% sure which diagnostic group I'm in but I guess since I was only x4 years to treatment that I'm in the not fully mutated group for IgH. if that's true it means I will need treatment again.
Just want to try and get fit again now after the FCR and get back to where I was pre-treatment.
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