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CLL Support Association
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Bone marrow biopsy

Had bone marrow biopsy earlier....he struggled to get the needle in...I'm so scared now that it is packed with cancer cells. Anyone had any experience of this please?

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Are you imagining there’s some correlation between difficulty in getting the needle in and the amount of cancer cells welshlady because in reality, it’s the density of the bone that should affect that.

You’re bound to be anxious about the result but I honestly don’t think that procedural difficulty equates to outcome.

Best wishes,

Newdawn

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Thank you....I've never had one before. So so painful...

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Sorry to hear it was painful welshlady. People seem to have varying degrees of pain and discomfort dependent on the skill of the person doing it and the density of the bone.

I’m due one in about 5 months and want everything including gas and air!

Sounds like you’re still feeling a bit traumatised.

Newdawn

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Oh I'm so sorry new dawn...dont want to scare you. It was painful but bearable I guess. Hope yours goes ok...

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You’re not spooking me welshlady. Everybody seems to experience it differently and I’m only sorry yours was so painful.

Do something nice to take your mind off it 😊

Newdawn

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Thank you ❤

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Newdawn,

I think like any other procedure, people have varying results, but for me, except for the initial needles for the local anesthesia and the sensation of negative pressure for the bone marrow withdrawal, I didn't feel a thing. For me, they basically used a power drill, but for someone else I know that had the procedure (different hospital) they used a non-power tool.

The spot was tender for a few days afterwards, but not a big deal.

@welshlady52, sorry yours was so painful, but I wouldn't draw too many conclusions from it. When getting blood drawn, sometimes I barely feel it, other times, it feels like I've been stabbed in the arm with a dull knife. Depends on the person doing it.

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Mine was HORRENDOUS,I’ve had two back surgeries and would have them all over again rather than that ,which I have to have next month !. I certainly am not a wimp by any means ,but with NO anaesthesia it was like I said Horrendous.I am at a different hospital now who azures me I will have help 😊

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"with NO anaesthesia" << not even a local? I couldn't imagine what that would be like. With just a local, I could hear the drill but didn't even realize they touched me with it until she said she was done. It's a shame that people are having such a negative experience with something that can be done so painlessly.

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Definitely no anaesthesia,as did Kathymac52’s husband looking at her post .Will definitely be making sure I get it next time ,although as I said a different hospital so hopefully the experience will be different altogether.

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Absolutely.......my husband had his first bone marrow biopsy 3 years ago and vowed never again, he screamed out loud it was so painful, ......we asked and received conscious sedation last year, and the experience was so much more peaceful and painless!!!

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Blimey, I hadn’t thought of the awful possibility that the level of pain might correlate to level of crowding in bone marrow. I’ve had two BMBs so far. The first I was unaware of ( being in a coma), the second hurt like hell - it is also dependent on where the nerves are clustered. The nurse had joyfully informed me it would take 5-10minutes - 1/2 an hour later...will ask for more pain relief next time. I do believe each of us just experiences it differently- I don’t think pain and disease are connected. Hope you get good results

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Thank you so much

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Sepsur and Welshlady,

I don’t think the pain correlates to the amount of cancer as much as it correlates to the proficiency of the person performing the procedure, individual structure of the bones and individual pain threshold— even how well the pain meds have worked before they start digging around.

I’m very sorry welshlady that it was so painful for you. 😢 Hugs a d hang in there...

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Thank you...still very sore this morning

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Did they say anything about using ice on and off in the area?

That can help but I believe not more than 20 minutes at a time and never directly on the skin. Then 20 minutes without...

Hope you feel better soon. 💕

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No they didn't but its def worth a try. Thank you so much❤

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With my first BMB my doctor let a resident do it. She had trouble getting into my bone as well and actually bent the tool in the process. My doctor then took over with a new tool and said that I had hard bones. I think that it would be more telling if they had a hard time getting a sample to come out. That happened with me and my marrow ended up being 98% impacted with CLL cells. That was the point when my doctor said that it was time to start treatment. I would try not to worry too much. I really think that it depends on who is doing the test.

Chris

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Just like me.... hard bones!!! Once they did it 7 times until de needle get to the bone!!! That was the only time i had really pain, not during but after!! I already did this bone biopsy about 6 times or more

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What a weird thing to say by a doctor "hard bones"? if we didn'thave hard bones we would not be able to walk or even stand up. Unless you have osteoporosis and your bone densitiy is low due to a disease everybodys bones should be the same. I think some doctors should improve their skills .

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Hi ,have you had another to know if your bone marrow is getting better ? ,mine was 80% which I was horrified at but my consultant assured me I should be fine 🤞

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Yes, I had one after FCR because they thought that I might have had a Rictors Transformation and it showed that there was no detectable CLL cells left in my marrow. I was very lucky that their suspicions were wrong.

Have you had treatment since learning they were 80% impacted?

Chris

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Yes I am on the flair trial which consists of venetoclax and Ibrutanib ,on the whole I am really well ,get the odd sicky patch and horrible Mouth ulcers ,I am due another bmb next month so fingers crossed ,my bloods are really good so hope that’s an indicator .

Good luck to you

Sue

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Good luck to you. Hopefully you will also have no detectable CLL cells left in your marrow as well. That's great that your blood counts are really good.

I had mouth ulcers on FCR as well. Biotine was my best friend...:)

Chris

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Thanks Chris I will try and get some ,is it over the counter or prescription?

Sue

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Over the counter. There may be a prescription level as well. I'm not sure.

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I'm not sure....maybe he couldn't get the sample easily as well. Bit stressed about it tbh. How are you now and how was the treatment?

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Was that reply to me? If so then I'm doing very well now. I had to stop FCR two months early due to what my doctor thinks was a rare allergic reaction to one of the meds. It took a long time to recover from that, but now I'm doing very well. I get monthly IVIG's to boost my immunities while my counts come up slowly. After FCR they did another bone marrow biopsy and the CLL cells went down from 98% to not detectable. Treatment really works so if your marrow is impacted with CLL cells they should be able to get that under control. Hang in there. You'll get through this...:)

Chris

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Sorry Chris yes it was for you. Oh that is fabulous news for you...and gives me hope as well. Thank you so much

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I'm in USA. For my bone marrow biopsy, they put me to sleep both times in the hospital, I wasn't given an option of local numbing of the area and to stay awake. They just put me to sleep and drill then I wake up with a small terry cloth taped to my rear to soak up blood where they went in to reach the pelvis. It doesn't feel painful afterward, just a bit sore and heals fast.

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Fantastic, this is how it should be done.

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My cousin has very hard bones, but also a high pain threshold. He told me that he didn’t feel a thing when he had his BMB, but that the doctor was almost in tears because she was sure she was hurting him. His hard bones did not result in a terrible report.

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Is this for a diagnosis or review. If it’s for a diagnosis, the only advise I can give is to wait for the plan. The waiting for results is worst part of a cancer diagnosis, we have all been there. When I was first diagnosed, I was told I was dying. Then the PET and Bone Marrow results came in and things got better. I’m now on watch and wait and have no symptoms other than a swollen spleen.

Keep positive, and don’t allow yourself to get run down. You immune system needs to stay strong! CLL treatments have moved on significantly and there are trails of new targeted therapies that are showing amazing promise. Search for CLL Clarity and CLL Flair. Good luck and try to stay positive!

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Thank you so much

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Hi - I was extremely anxious too. I was offered gas-and-air and it was great. I really didn't care after the first puff and wasn't really aware of anything going on. No hangover either! Wish I could get it on Amazon...…….!

Handley

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I had a bone marrow biopsy when first diagnosed 8 years ago. It was done twice as they had a problem doing it. Just to ease your mind I am still on WW. Hazel UK 😊

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Thank you

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Hi welshlady52 my small piece of advice, I have had 2 and lining up for number 3 is, record the conversation when you get the result and ask for a copy of the lab results. There will be a lot of numbers and letters that they will throw around but after the first one it just becomes a muddle and u need time time process. Best of luck.

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I've never had copies of anything and been on W and W for 10 years

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I always ask for a copy of my blood results - sometimes I have to ring the secretary because this or that printer isn’t working, but I’ve always had them eventually.

Sorry it was so painful for you. I feel prewarned, so thank you!

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Let’s not panic until results are in. My first BMB was a struggle too; it depends who is doing it.

Mimi in GA

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Thank you

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I have had 8 over past 17 years all they put me under light anesthetic via needle in my IV. Only issue was dull pain for a couple weeks after it. Re trouble getting it in it is the bone density. I remember my original Specialist said he broke 7 needles trying on 1 patient who had had iridium for cancer treatment that made his bones like steel.

Good luck my last 1 he said I was a poster boy for my treatment . That perked me up .

Oh a bad result can be turned around my previous 1 shown full bone marrow failure now it is near normal.

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Thank you so much....it gives me hope

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Dear welsh lady I’ve had two BMBs both without anaesthetic. Not offered!! Tough lot here in Oz!! They do prod and poke about a bit I know. Just get it over with we mutter under our breath, gritting ones teeth at the same time. If that’s possible. It is sore for a few days afterwards. It gets better.

I’ve been through the mill of treatment and side effects. This was after a few years of W&W. I’m doing well now sfsg after nearly 6 years post FCR. ie Chemotherapy.

Lots of good oral treatments available now. Lots of hope and optimism for the future.

Sheila in oz

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Thank you so much. I think maybe it's because I have spinal stenosis as well ir hurt more..also arthritis in lower back.

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I've had 3 as part of the clinical trial. They had trouble getting the marrow out on the first one when I was 80% plus infiltrated. Getting the needle in with difficulty would more be around bone density which is high in my case, otherwise is a good thing! Third time they used a drill rather than a hand tool with no comment.

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I’m so happy this part is done and now you know what it feels like if you need another down the road. I too think it varies depending on patient and the skill of the doctor. It sounds like you have “good bones”.😀 my husband needs one in a week and I hope it goes as smooth as the last one.

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Hi had one 2 years ago and find it to be ok, maybe I am a bit insensitive!

My doctor talked me through it and gave me enough painkiller that I didn’t feel anything and he explained the tingling feeling in your leg as it’s done.

I had 80% infiltration of immature cells,CLL and although they were to start Chemo they decided to hold off, I am 71 years old still working diagnosed with CLL 6 years ago and still on wait & worry! Previous bowel cancer 5 major ops and 32 weeks of Chemo.

Good luck to you try and relax and not worry too much, be mischievous and cause a little trouble each day so everyone knows you are still alive!!

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Thank you!

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Yes June of 2018 had this done I was lucky I guess it was a snap My only regret was I was looking around before the process started and I saw the "tech" lol he looked younger than my grandson and was carrying what looked like a cork screw But after the local shot I never felt anything they did find the CLL trait in the marrow but I am still Sort of Dormant as of today Next follow up after the previous three is July. so far CLL just sitting in marrow. no progressive PET scan showed no active cancer So Wish you same luck

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Thank you so much

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welshlady52,

Glad the BNB is behind you, as they are no fun even if they go well. I did not enjoy it, did not even smoke a cigarette afterward. I don't think about it much now that it is over.

The results will provide you with a baseline of measure for the disease and will prove to be most useful. It will be the beginning for you to understand how to live with and plan for treatment when and if you need it.

After you receive the lab results and discuss them with your oncologist, we will be here to offer you our insight as best we can.

I found many on this forum to be very experienced, knowledgeable, willing to share information, help each other alleviate anxiety, and learn to live well with CLL.

Take a breath, allow yourself some comfort.

JM

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Thank you so much

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Hi Welshlady52

I so hoped that all would go well, so sad to hear it was an unpleasant experience. From our years of reading about everyone's experience I don't think the difficulty or otherwise bears any relation to the outcome or density of cancer cells.

I have all 8 years of my blood results, I just ask for them and it has never been a problem. It enables one to follow the trend, particularly of the ALC.

Do let us know how you get on.

Best wishes

Bubnjay1

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Thank you Bub x

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I have had two bone marrow biopsies, one being sedated & the other with just local anesthetic at Mayo Clinic. I would just do the local anesthetic Doing a good relative pain free bone marrow biopsy requires the following:

* a skilled operator who does many, many biopsies

* the type of local anesthetic (Mayo’s uses lidocaine without epinephrine).

* waiting for at least 5 minutes before starting any procedure after administrating the anesthetic. I believe Septocaine should be used instead of lidocaine as you get better bone penetration with Septocaine.

* if all this is done correctly, what I felt was pressure with no sharp pain. Very tolerable, but then everyone has different thresholds of pain. I just don’t like to be sedated. Anyone who has done bone marrow biopsies, please feel free to respond.

Varney

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Its uncomfortable for sure - I found focusing on a spot on the wall that had some cracks in it (shapes, what I imagined it to be , etc) and consciously taking slow breaths helped a lot. Stay positive and do lots of visualization of your strong body/mind ... you can get through anything!

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Thank you

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I’ve had 3. Definitely not fun. each time they gave me IV pain killer that made me truly not care about the whole thing. Sore for at least a week. If the IV pain meds is an option- do it!

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Wasnt offered that at all.. just local. Hope I dont have to have another!

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I only do bone marrow with sedation and imagining. No problems. Sorry for your experience

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Has anyone else had the biopsy done using a drill instead of a needle like I did? Maybe that was part of reason mine was so painless. @welshlady52, do you have the option to choose the place the you have it done? Maybe you can inquire about how they it if you have to have another.

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I'm not sure tbh ...it was my heamatologist that I always see who did it

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Please do not succumb to this medieval method. REQUEST to have it done under short-acting anesthesia. If they refuse, look for a doctor who will agree.

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I had mine in May and it was slightly uncomfortable but nothing more although the site on my hipbone was sore for a day or two. Just lucky or an excellent nurse practitioner..

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