Well it's just typical... after having an allergic reaction to contrast from the body scan, I then had a bone marrow biopsy on Tuesday. The doctors was fab, talked me through the whole thing...lots of tugging pulling etc... she then told me..after 20 mins.. that she was really struggling to get a sample. She changed needles but still had difficulty.
I saw the consultant after and asked why and he said that it was possible that the bone marrow was packed with com cells.
What are the implications if this...
starting treatment?
delaying treatment?
is it common?
further bone marrow testing?
any ideas anyone!!!!
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Bethan49
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I presume 'com cells' was auto corrected from CLL cells? If so, then I suspect your consultant attempting a joke which was in poor taste. Given a biopsy is designed to inspect the degree of CLL infiltration and some patients report infiltration percentages into the high 90s, I wouldn't be worried about your bone marrow being too packed with CLL. If it was that bad, you'd be quickly getting puffed due to anaemia and most likely be bruising all over from low platelets. From your earlier posts it seems your particular version of CLL prefers concentrating in nodes. Do you have a copy of the results from a recent blood test that could reassure you?
A precondition of joining a clinical trial is meeting specific assessment criteria. Your consultant should have explained what was required and what the next steps will be, which I presume may require another attempt at a bone marrow biopsy from a different site?
I feel for you! I had a similar experience when being assessed for a clinical trial. The team performing the biopsy had to make two insertions to get a good sample, and even then they weren't sure if the sample would be sufficient. Turns out it was, and I entered the trial. My CLL specialist commented that my experience was not uncommon, and if need be they would "just keep trying till they got it." Glad they didn't have to.
Please keep positive and let's hope the sample you gave is sufficient!
Well...to be honest, I never thought of a BMB as being such a big deal/ordeal anyway. My haemo says I'll have a local anaesthetic first and then they'll have a go at getting some bone marrow. The haemo just told me I may be a little sore when the anaesthetic wears off but that I'd still be OK to drive home or back to work.
I know there are people on here who have had a "less than perfect" experience with BMBs, but I'm sure many people have a straightforward procedure. If you've had a "stand out" experience - good or bad! - it usually makes an interesting story but, a run-of-the-mill procedure may not be so newsworthy, so maybe that's why we don't read about them.
I'm heading in to my BMB in the knowledge that it will be a little uncomfortable and that I'll be left with a bruised and sore backside but, in the big scheme of things, I don't think it's worth stressing about (I had my daughter by Caesarean section whilst I stayed awake - if I can do that then I'm sure manage the biopsy!)
I'm sure the docs will make sure none of us suffer unnecessarily - we'll be fine! ☺
That's great, you sound very positive. I haf two C sections whilst awake also and found the whole thing scary even though I was trying to be as brave as could be. Not so sure I want to try so hard to be brave anymore though so Ill probably be asked to be sedated when I need my BMB. All the best with it. Anne
I had my BMB last week and came here to post a quick update, just for your info., as you seemed a little concerned about preparing yourself for a biopsy. Unfortunately, it looks as though my original post has disappeared (it was posted over the weekend when the website was having problems - I think it's lost forever😕).
Anyway, just in case you're interested, my BMB was fine! I went into the experience in a positive frame of mind - I smiled, had a good chat with the doc and the nurse (we talked about the weather, restaurant recommendations, politics and Christmas!) - and the whole thing was over in less than 30 mins.
The most uncomfortable part of the whole process was when the doc introduced the local anaesthetic - the doc promised that it would sting a little...and she was right! But it was just like a nettle sting, and only lasted a few seconds - not a big problem at all.
Once the anaesthetic got to work, the doc took the marrow sample and also a small bone sample. This was not painful at all - it was more like an odd sensation, as the doc pressed on to get the samples but, again, it was all over within a very short time - the doc slapped a sticking plaster over the injection site and sent me on my way!
I collected my husband from the waiting area and we headed off for coffee and a lovely cake. We then went to the cinema, followed by an early evening meal, before a visit to our 2 year old great-niece on her birthday!
A BMB may not be something we all look forward to but I honestly found it to be a very quick and easily bearable experience. It took less than an hour out of my day (including travel and waiting time) and I was quickly back to "real life".
I hope my story gives you some comfort - my biopsy turned out to be a very tiny "blip" on my life's journey...I'm sure yours will too! ☺
My first BMB was difficult and the dr said that she didn't think that she got an adequate sample. Turns out that they were able to make a diagnosis from it. Since then, I've gone through the BMB experience twice more at M.D.Anderson. I've had them knock me out and when I came to, they had what they needed. BTW, I had 40-70% involvement first time and 20-30% the last time which was July 2014. Treatment program is ibrutinib since April 2014, and I'm doing fine other than minor side effects including fatigue.
This may or may not be a comfort to patients - I had BMBs taken from my thigh at least twice (pre- and post- chemo) by a very experienced haematologist - he plunged the needle in, counted to ten, withdrew it - all done in a flash, with minimal discomfort and no anaesthetic.
So, I'd guess anyone having problems... is caused by a lack of dexterity by the specialist. (His nurse was full of praise for his competence in this procedure.) Not every Dr has the same skill set - they may be a bit clumsy with BMBs, but excellent in their general knowledge of the treatment, conditions etc.
I also get the impression that BMBs are not carried out so often these days, whereas they were pretty standard a while ago. My specialist had clearly done this very many times... younger Drs simply may lack the experience and confidence to do it well. It seems that the current fashion is to base conclusions on blood samples rather than on bone marrow (I base this comment on what I've read here - please correct if that's a mistaken impression.)
(I was also pretty pleased that I had it done - there was a very heavy infiltration of CLL in the bone marrow pre-chemo; afterwards, my Dr told me the results were so good, he had to check that he was reading the correct sample results!)
I had a BMB two weeks ago and they also had the same problem. They also collect a bone sample, usually second. In my case, they took the bone sample and they sucked away and things worked out. In my attempt at humor, all I could say was it will be easier next time because I'll be in remission!
I had a similar experience with my first bone marrow extraction last year...changing needles...pulling...discomfort. she finally got some but not as much as needed..My marrow was something like 85% effected. My next extraction three months or so later after starting on Ibrutimid was easier for her to get and less affected. So hang in there.
Lots of things make up an individual's BMB experience. Most important seems to be the experience of the person doing the procedure. For particular centers specific doctors or nurses have been recommended as the ones to get. How hard your bones are and your threshold for pain also are factors. My cousin apparently has very hard bones, but a very high threshold for pain. He told me that his doctor had a very hard time getting a sample and was upset because she was sure she was hurting him. He barely felt it. My first two I was awake. I remember being panicked more than feeling pain, and there was no pain afterwards. My third one I was under. I had twinges (not real pain) for about three days after that one. I thought it was because the doctor didn't have to be quite as gentle since he didn't have a panicked patient to work on. A nurse told me, several years later, that they often use a bigger needle if you are asleep.
I hope your doctors are able to test with the sample they got, Bethan.
I hope you are well. Last week you seemed to have some concerns about how to approach a bone marrow biopsy so i just wanted to pop back online to let you know how things went with my biopsy today.
My appointment was at 10.30 this morning (I'm in the uk). I was kept waiting for a while but, hey...I just figured someone in front of me needed a little extra time - and patience is meant to be a virtue in any case!😉
So...I was called through to meet the doc and nurse who were going to carry out the biopsy. I was determined to go in with a positive attitude so I smiled, said hello and set things off on a chilled and friendly footing.
I'd already been given a leaflet explaining what the procedure involved but the doc checked I was OK with everything before asking my to lie on the bed. I was asked to lie on my left side and just rearranged my clothing so that the doc could find the most boney spot for the injection. The injection site used here is usually at the back of the pelvis, which is really above the buttock and on the lower back. I didn't envy the doc in finding a boney spot...I'm not a small woman and have plenty of buttock/lower back to work with! 🙂
Anyway, the doc did find a relatively boney bit quite easily and proceeded to clean the area before injecting the anaesthetic. The anaesthetic did sting a little but was honestly not painful...just like a nettle sting but for only a few seconds.
The doc then went ahead with her job of getting the marrow sample. She explained each move - "this may feel odd", "I just have to press on a little", etc. but there was certainly nothing painful involved...it was more of the "odd" pushing sensation that the doc mentioned, rather than painful.
She was happy with the marrow sample and then went back to get a small bone sample. This bit was even less "odd" than the marrow sample - no pain, no odd sensation and done within a couple of minutes.
Throughout the whole process, the doc, nurse and me chatted. We talked about the weather (well...we're British), holidays, eating out/recommended restaurants and politics. We laughed, complained and generally passed a fairly pleasant 20 mins before the doc slapped a plaster (bandaid in the US??) over the injection site and sent me on my way.
I collected my husband from the waiting area and we went for a lovely coffee and cake!☕🍰 Later, we went to the cinema, then for an early evening meal and a wonderful visit to our great-niece on her 2nd birthday!🎈We are relaxing at home now and the biopsy is simply a fast fading memory.
I just wanted to pass on my experience as you seemed a little unsure about how to prepare yourself for the biopsy experience. I can HONESTLY tell you that, for me, it was a quick, straightforward procedure, performed very professionally and with just a few odd sensations when the doc had to use a little pressure and a bit of stinging when the anaesthetic was injected.
I took a couple of painkillers as soon as I started to feel a dull ache at the injection site and, as I'm just about starting to feel an ache again, I'll probably take another couple before bed. But, that's it...all done and dusted!
I do hope my tale is useful for you. I know we're all different, and may have varying experiences with the medics dealing with us, but I was more than happy with my treatment under a local anaesthetic - it left me free to enjoy a great day out with my husband and get back to just living life!
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