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MDS Myelodysplastic syndromes

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  #1  
Old Fri Feb 7, 2014, 05:58 PM
bailie bailie is offline
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Bone Marrow Biopsy - The drill it is.

I realize I am new at this. I have only had three BMBs. Without a doubt the winner is the "drill". I felt zero pain through the whole process. I was given some Fentanyl which worked great. Last time I had morphine which I couldn't feel at all. The best part about the three different BMBs is that they didn't come close to anything (pain) that I previously anticipated.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #2  
Old Fri Feb 7, 2014, 07:22 PM
Whizbang Whizbang is offline
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My 1st BMB was a true 10/10 pain, never really felt such a sharp pain... The doctor used a freeze spray on my skin and bone... The one thing I will give him is, was that it was quick, like 45 seconds from start to finish...

My 2nd was with the same doctor, and was only 9/10, even though he missed and had to re do it... He said "I forgot how thick you bone is", but it was still quick...

My current doctor uses lidocaine, and it is much better, but was still painful, 7/10 for my 3rd BMB/BMA...

I think I am getting used to them, because each time it gets better, 5/10 and 3/10 pain the last two times they were done (last one a week ago today)...

I've never been sedated, only locals... It's all part of the process, and in an effort to keep costs down... But using a local also helps to prevent any possible sedation risks...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #3  
Old Fri Feb 7, 2014, 09:42 PM
Cheryl C Cheryl C is offline
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I did have one nightmare BMB. However I have found a fantastic pathologist who has done two of my other BMBs and will do another one (my fifth) this week Yes the local anaesthetic hurts and it hurts when they suck the marrow out but he is cheerful and confident and jokes all the way through, which makes it so much easier.

Yay for your 1% blast count Whiz! Fantastic. Hope you're over your recent illness now.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #4  
Old Fri Feb 7, 2014, 09:57 PM
maggiemag maggiemag is offline
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Thumbs up All good here!

I just had my 4th this past Wed., and my experience is that it gets easier each time. I have only had a local b/c that's all that's offered, but I don't need anything else. On a scale of 1-10, I've had about 6, 4, 3, 3, and the sharp pain only lasts about 5 sec. I feel extremely fortunate as you hear so many horror stories, but I think my doctor is the key. The nurse told me that she uses 2% lidocaine where the others use 1%. I guess it makes a difference someway. She also told me that my bone is soft. I don't have osteoporosis though. I don't think she used any special drill.

Hoping my cytogenetics don't change...My whites are now too low, along with the reds; platelets still good.

Good luck to all,
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #5  
Old Sat Feb 8, 2014, 12:09 AM
bailie bailie is offline
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My first BMB, I didn't have an IV. Since I found my MDS diagnosis from a kidney stone attack (and blood test CBC) I had a few extra Vicodin left over. I took a couple of them about an hour before the BMB (is that cheating?). I felt very little pain and then they did the local with the Lidocaine. The only thing I noticed was that this big person doing the BMB was having trouble speaking as he was working. After it was over, I looked at him and his face was all red with a few drips of perspiration on his forehead. Then he muttered something about really hard bones.

The difference with the drill was that there was no pushing pressure. He also said they get a much better sample with the drill. I still don't feel any pain nine hours later. I'm looking forward to getting my results that will most likely determine my transplant schedule. Insurance said "no problem" for the estimated $433,000 procedure. I thought that was a big number.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #6  
Old Sat Feb 8, 2014, 09:34 PM
curlygirl curlygirl is offline
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It kills me that they don't sedate adults for BMBs. My son's doctor used to treat both adults and children, and now only treats children at a children's hospital. She said giving biopsies with local anesthesia to adults was awful. She thinks everyone should be put under. When my son gets a BMB it is so fast that the anesthesia barely affects him. He wakes up right away and feels fine. Nothing like when he had his Port-o-Cath put in. Then he was under anesthesia for 45 minutes and really felt it. Woke up slurring, threw up after eating that night, a very hard recovery. I almost fell out of my chair when she said that ATG treatment is out-patient for adults in the US. My son had so many complications that he had to be in the PICU. How could he have those complications at home? We live 1 hr from the hospital! It's a shame what "cost-saving" has done in the US.
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  #7  
Old Sun Feb 9, 2014, 02:16 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by bailie View Post
I'm looking forward to getting my results that will most likely determine my transplant schedule. Insurance said "no problem" for the estimated $433,000 procedure. I thought that was a big number.
The estimate for the BMT is 433k?. Sounds low...One thing that I've noticed having cared for 2 elderly parents is that Medicare will pay incredible amounts of money to buy some time for an 85 year old, even more than that. So, when it comes to giving you the chance for 20 years its a bargain compared to the money they spend to prolong the lives of the very elderly, 85 and up.
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  #8  
Old Sun Feb 9, 2014, 02:34 PM
Whizbang Whizbang is offline
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My 1st bill was 395K for the hospital stay, didn't include 40K for pre testing, similar bill for my brothers testing (covered by his insurance)...

Doesn't include all of my post transplant care, or meds...

Of course I am in network with MSK-CC (Cigna), so the discounts are incredible... Maybe 25-50% discounts...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #9  
Old Sun Feb 9, 2014, 04:16 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by Whizbang View Post
My 1st bill was 395K for the hospital stay, didn't include 40K for pre testing, similar bill for my brothers testing (covered by his insurance)...

Doesn't include all of my post transplant care, or meds...

Of course I am in network with MSK-CC (Cigna), so the discounts are incredible... Maybe 25-50% discounts...
Don't matter.. What cost more Homeowners insurance or Health Insurance?. Rhetorical Question... Now, how many people lost million dollar homes, or 500k homes during Hurricane Sandy? or a fire, a tree what have you..
Around here this area got hit really hard during Irene. So, if a home is worth 500k, a BMT is priceless. Can you put a price on 20-30 years? no. Quality of life? no. I feel no pain for the Insurance companies.
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  #10  
Old Fri Mar 7, 2014, 08:50 AM
dougr dougr is offline
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Just had my first BMB with the punch method and Lidocaine. Usually, the doc does not use enough of it so my request was for her to use the whole bottle. Fortunately, she and her assistant were excellent and it was not bad but kinda sore for about four or five days afterwards. The doc had a drill but did not like using it for several reasons most of which were fine with me.

The results are next week; anticipation sucks.
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Dx pending Jan.2014; 68 yo, BMB in two weeks, WBC dropping fast....CLL dx 2011; Trisomy 12
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  #11  
Old Fri Mar 7, 2014, 09:31 AM
MelanieW MelanieW is offline
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ATG for adults is inpatient in the U.S.
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Melanie, age 52. Dx AA 11/11, ATG 3/12, partial response, still on tacrolimus
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  #12  
Old Sat Mar 8, 2014, 02:00 AM
Glenda H Glenda H is offline
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I had my 4th BMB done on Tuesday. Second time done under twilight anaesthetic. I've had no soreness in the area at all.
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  #13  
Old Sat Mar 8, 2014, 12:08 PM
kyis kyis is offline
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Gamut

I have had the gamut of pain from bmb. I think 6 or so now. Every 4 months. Usually an 8 to 10 of 10. The 10 was bad couldn't even talk, just tears. Last one about a 2 or less (different dr). Afterwards I have pain last for weeks and sometimes just a little pain for a few hours. Always the punch and a workout for dr. Yes heard that hard bones comment also. 2 vicodin an hour ahead has certainly helped lately. My insurance $5 for procedure. I think the vicodin cost more.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #14  
Old Sat Mar 8, 2014, 12:51 PM
bailie bailie is offline
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Kyis,

What is your status now? Vidaza? Transplant?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #15  
Old Sat Mar 8, 2014, 01:54 PM
surabhi surabhi is offline
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BMB area black and swollen

My mom has had 4 BMS so far, in three of them the pain subsided and the wound was fine from the third day on but she had a fourth BMB a week back and her back still hurts a lot. The area is swollen and a considerable area around it has turned black.

Can anyone suggest what it might be and what can be done to help her?

Many thanks in advance.
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  #16  
Old Sat Mar 8, 2014, 03:59 PM
maggiemag maggiemag is offline
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Hi; sorry that your mother needs to have BMB. It sounds to me that she either has a hematoma or just significant bruising from the procedure last week. A hematoma is just a collection of blood under the skin. They can take weeks and weeks to go away but it will. Other than maybe some heat at the site, I don't think there's any effective treatment. I would make the physician aware though They might want to check it themselves.
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #17  
Old Sun Mar 9, 2014, 03:58 AM
surabhi surabhi is offline
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BMB area black and swollen

Thank you Maggie.

She is too weak to go to the hospital and the pain isn't subsiding. I will try heat therapy and she how it works out.
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