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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jul 8, 2008, 01:48 PM
LynnI LynnI is offline
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Very painful BMB

What are your experiences with BMB? Everyone I have had has been very painful, I feel it right down the bone into my toes.
I use to think that I had a high pain tolerance, considering different injuries that I have had over the years, including a fractured femur. That was a piece of cake compared to the BMB.
All mine were done in the hip, once with me laying on my side while they did it coming sideways into the pelvic bone. The other two were done from the back.
Can't person be knocked or at the very least be heavily sedated and almost asleep for it?
Or am I just being a wimp?
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  #2  
Old Tue Jul 8, 2008, 04:01 PM
Marlene Marlene is offline
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Hi Lynn,

You are not being a "wimp". Yes they can sedate you. I don't know why but some don't want to...maybe it's too much work for them.

John's first one was done with a local. The biopsy was not the problem...it was the aspiration that sent through the ceiling. I asked his doc how they do children and he said we sedate them....duh! His second one was done with a local and sedation. It didn't knock him out completely but it made the procedure more tolerable. I know some get completely sedated.

I would definately demand it especially since you've had multiple painful ones.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #3  
Old Tue Jul 8, 2008, 06:12 PM
Dick S Dick S is offline
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They took two aspirations at the same BMB on mine and they both hurt, no sedation. Then they took a bone core sample, now that one makes an aspiration feel like a piece of cake. Aspiration last 3-5 seconds, bone core last 18-20 seconds and WOW!
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #4  
Old Tue Jul 8, 2008, 07:41 PM
MNladyslipper MNladyslipper is offline
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Our doctor always asks if we want to be sedated or not. My husband has been sedated both times and it has not been painful at all.
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Bev,husband diagnosed MDS RAEB-1, intermediate - high risk, lots of chromosome damage Jan. 2008; Revlamid, awaiting cord transplant.
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  #5  
Old Tue Jul 8, 2008, 08:18 PM
Neil Cuadra Neil Cuadra is offline
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Don't let them do another bone marrow biopsy without proper pain management, Lynn. It's their responsibility to treat this problem as they would any other, and use the best available technique.

Please read the Bone Marrow Biopsy thread from last year.
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  #6  
Old Tue Jul 8, 2008, 10:14 PM
LynnI LynnI is offline
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Thanks for the replies. My Dr and I are going to have a little chat, I really like him but enough is enough. I don't know when my next BMB will be (at this rate of once a month, it should be before summers end (joking), be I don't plan to be a wake for it, even if I have to looking into changing Centres.
My second BMB was a deep core, silly me when I thought the first one was bad............and the last one a few weeks ago was no different than the first.
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  #7  
Old Wed Jul 9, 2008, 09:43 AM
Margie Margie is offline
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very painful BMB

I am glad to see this topic discussed. When my hemotologist told me he needed a BMB five years ago when my myelodysplasia was discovered, I insisted on sedation. He couldn't do this in the North Texas Cancer Center where he has his office; therefore he sent me to a hospital outpatient unit in another city. I thought this odd. A few years ago, I went to another doctor in Dallas for a second opinion just because I thought it prudent. He wanted a BMB before he could give me an opinion. He wanted to do it with just a local, right then, immediately, in his office. I declined. My regular hemotologist has not done another BMB since the one he did five years ago; I feel that his hesitancy to do another one comes from my insistence for sedation for this procedure. I would hate to think that he wants to do it in house only because of the revenue it generates for the clinic where he works, so he doesn't want to send me somewhere else. If so, why don't they have someone who can administer sedation in house?
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  #8  
Old Wed Jul 9, 2008, 10:15 AM
Dick S Dick S is offline
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Margie, I don't think it's a question of revenue, but more a question of inconvenience on their part of having to send you somewhere else and the time delay, rely on their timetable schedule and getting readings and results back from doctors and techs that they are not familiar with. Also, in many places, sedation requires and anethesiologist (doctor) to perform it.
My Onc/Hema does mine, including locals, in his examining room and we all agree they certainly aren't fun. But I have agree to some extent, 'cause even my VA Hosp. (huge) can do almost all the readings in house, but they too have to send out for the chromosomes. Just my $.02.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #9  
Old Thu Jul 10, 2008, 07:49 AM
Alison Alison is offline
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Unhappy

Hi Everyone,

My Dad's cycles of Vidaza had no effect. He went into hospital yesterday for platelets and RBC. The doctor however has chosen to keep him in hospital and is talking of giving him three weeks of Chemo while in hospital? He has just had a bone marrow biopsy (without sedation!). The doctor who did it for him mentioned to him that his bone is "soft". Do any of you know what this means? I'm assuming that they have given him the biopsy to track the progression of his MDS (high risk)? He is in a hospital 3 hours away from us so we're communicating long distance which is frustrating.

Alison
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Alison, daughter of Rod aged 61; Dx May 2007; was on Neupogen and Eprex Aug - Dec '07; Vidaza recommended 6 cycles starting Jan '08, only 5 cycles completed. Chemotherapy commenced: July '08 - Feb - '09. Cytarabine & Daunarubicin. Transfusion dependent.
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  #10  
Old Thu Jul 10, 2008, 05:44 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Alison View Post
My Dad's cycles of Vidaza had no effect. He went into hospital yesterday for platelets and RBC. The doctor however has chosen to keep him in hospital and is talking of giving him three weeks of Chemo while in hospital? He has just had a bone marrow biopsy (without sedation!). The doctor who did it for him mentioned to him that his bone is "soft". Do any of you know what this means?
The doctor may have simply been referring to the lack of difficulty of doing the bone marrow biopsy to get a tissue sample. Since the sample is extracted from bone, softer bone would be easier to penetrate during the biopsy procedure. If there's a real concern about bone strength or condition, there are tests for that, but this sounds more like an off-hand comment. I hope that your dad's "soft" bone at least made the procedure less uncomfortable.

Quote:
I'm assuming that they have given him the biopsy to track the progression of his MDS (high risk)?
That's a good assumption, Alison. An initial bone marrow biopsy is usually necessary to diagnose MDS, while further biopsies help track the progress of the disease.

Communicating long-distance is difficult. Also, it's hard for a patient to remember and repeat to their families everything that the doctor says, so I suggest to family members that they arrange to talk to the doctor directly, either by traveling to an appointment with the patient or by telephone, so they can ask their questions directly. As long as the patient gives permission for a family member to talk to the doctor, the doctor probably won't mind.
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  #11  
Old Fri Jul 11, 2008, 09:56 PM
Wendy Beltrami Wendy Beltrami is offline
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I don't know why adults aren't given sedation automatically like children. What could possibly be the benefit of anyone going through that agony?

Grant has had 7 BMA & B's and I've said this before but they are always a "non-event". Usually I insist he takes some Tylenol afterwards but seriously, he is usually not even slightly sore.

We all understand the risk of anesthesia, but usually Grant is out for maybe 15 minutes tops and the benefit vs. risk of using sedation is not even a question in our minds.

Wendy/mom to Grant
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  #12  
Old Mon Jul 14, 2008, 10:47 PM
Steve Kessler Steve Kessler is offline
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BMB without sedation

My first one was without sedation because I was in a hurry. After it was over, I walked down a hill eight blocks to my office. It hurt, but was bearable and I didn't need to have soimeone drive me or wait to recover. I think I was overly confident and all my BMB's since then have been sedated.
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Steve Kessler,Age 71, Dx 3/2001, Currently AML converted from MDS, 5q-, 11q23, Negative response to Aranesp, Revlimid. Partial response to Vidaza in the past. On a study using ON1910.NA, counts too low to go to Stanford on schedule.
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  #13  
Old Sun Sep 14, 2008, 02:39 AM
RickGuam RickGuam is offline
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BMB was no problem for me

Hello Everyone,
I have not been officially diagnosed yet after 9 months of blood tests and the last BMB, but with all the reading I've done, I at least am getting a bit of a headstart.
Anyways, the last BMB was actually pretty fast and it only hurt four times for a few seconds when the bone marrow was taken out.
They numbed the hip area and showed me that big needle and I was praying real hard. The whole procedure was probably about 10 minutes. No pain after that. I just took some Tylenol and that was it. Whew!
It really wasn't a bad procedure. I am getting another one next week because I want to know what is wrong with me. I've waited too long for them to find a diagnosis. The hematologist keeps telling me to come back in 2 months and see if there's been any change. I'm tired of it!
Unfortunate for me, I live thousands of miles away from the mainland USA, and I wish I could get a second opinion/third opinion for my condition. I've decided to leave island in 4 months to take medical leave.
I am hoping that my insurance company will approve me to go Stanford University Medical Center.
I hope this helped everyone..... Thanks for having this forum..
Adios, Rick
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  #14  
Old Sun Sep 14, 2008, 04:50 PM
Tom M Tom M is offline
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My problen has always been the great difficulty they have getting the needle through my dense bone. They usually work up a good sweat going after my marrow. Now, I have a cat scan done just prior to the bmb. Once they have located the thinnest section of hip bone, they mark the spot. This is much easier on them and me.

I have found that slower aspiration of the marrow is much more tolerable, pain wise, then a quick aspiration. My first bmb was very painful, and he did aspirate quickly. It felt like I was being stuck with a red hot poker, and the pressure was intense. Now, with slower aspirations, it is not bad at all. I hardly notice it.

Maybe one or both of these little tips that work for me will help you.
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Tom, age 56, diagnosed with MDS RAEB Oct of 2006. Previously treated w/ vidaza, unsuccessfully. Revlimid successful 1 year. Progressed to AML 4/08 w/ 20% blasts, now in remission. BMT to take place 10/08.
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  #15  
Old Wed Oct 1, 2008, 11:40 PM
alicat4790 alicat4790 is offline
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I know what it is like to have a BMB!!!

And yes they really do hurt. I cried both times I got them. I told the doctors I will not go through that again. But I believe I will have to later down the road. I have MDS and will be starting Vidaza next week. If you want to email me about your experiences please do. My email address is:

alicat0226@hotmail.com

If you want to call me, my number is 703-606-3192 after 9 pm. I am from the Washington, DC area.

Can you give me your first name please. My name is Caroline.

God Bless,

Caroline
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  #16  
Old Fri Oct 3, 2008, 02:08 PM
JulieC JulieC is offline
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My husband has had several BMT's but the worst one for him was done at the hospital by the pathologist. We had just gone to the hospital to discuss with the transplant team his option and they ordered another BMT to make sure the disease had not advanced. He was in pain for days and the area became slightly infected. He gave his local office kudos for the way they do it, even though he is never sedated just a local.
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  #17  
Old Fri Oct 3, 2008, 07:02 PM
Ruth Cuadra Ruth Cuadra is offline
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It doesn't have to hurt

Don't forget to read the Bone Marrow Biopsy thread from last year. There's a lot of good information there about how to avoid pain from this procedure. Local sedation works fine for some people (I'm not one of the them), but no one should suffer much less take days to heal.

Regards,
Ruth
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