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Whining about bmb

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#1 Gail's


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Posted 30 January 2016 - 03:40 PM

The title of this post is to warn those who are worried about an upcoming bmb. Don't read this if you are. Just had my second bmb and unlike my first experience, it was horrid. I evidently won't ever need a bonedensity scan. NP doing the test said I have the hardest thickest pelvic bones she's encountered. Whoopy! Doesn't make up for the fact that my sciatic nerve was hit and I'm still hurting 5 days later. I don't hold the technique or person to blame. Just a tough cookie I guess. But I burst into tears from the pain and I had unmediated births. I hope I don't ever need another bmb, but if I do, it will be under light sedation. And hats off to those who have issues with sciatica, I never have had it, and it really sucks!,
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#2 chrissy778


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Posted 30 January 2016 - 07:03 PM

I never had the nerve hit but while I was getting mine done I reached out and grabbed my Drs calf and held on with a death grip... I will also ask for sedation if I ever have to have it done again. My sister n law had it done and said she did not feel anything when she had her bmb. Pretending she had a high threshold for pain. She asked me "what does it feel like"? I had to pretend to not want to punch her.. lol then come to find out from someone else she had hers done at the hospital with sedation.... Hah biatch

Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of

#3 Trey


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Posted 30 January 2016 - 11:49 PM


Hah biatch???  When did you become a rapper? 

#4 hannibellemo


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Posted 31 January 2016 - 01:14 PM

Chrissy, you should have grabbed his testicles, he might have been more empathetic!  :lol:



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#5 kat73


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Posted 31 January 2016 - 01:18 PM

Y'all are FUNNY.  Thanks for the laughs this afternoon. 

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#6 Buzzm1


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Posted 31 January 2016 - 01:33 PM

Chrissy, you should have grabbed his testicles, he might have been more empathetic!  :lol:

that was my first thought too ... 

For the benefit of yourself and others please add your CML history into your Signature


02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive


2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17


At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  


In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  


longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.


Cumulative Gleevec dosage estimated at 830 grams


Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

#7 KatherineDB


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Posted 01 February 2016 - 10:08 AM

I've had 12 surgeries in my life, and a BMB ranks well up there on a pain scale.  I want an epidural next time.  I've had three of those, and I can handle that.  During the BMB I was holding my husband's hand with a death-grip and even then I couldn't help whimpering while tears ran down my face.  The NP stepped out and got someone else, but that didn't help much.  I was told I had a really dense hip bone, and I told my husband that was pretty amazing, since I have been diagnosed with osteopenia, and my hips are supposed to be one of the worst places for the osteopenia.  I will indeed ask for meds or better local anesthesia next time.  They put in some local injection, but that did nothing as far as I can tell.

#8 SunNsand



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Posted 03 February 2016 - 10:03 PM

I'm starting to have my doubts about hard bones being the reason Dr's. have a difficult time with BMB's. I've had two, both times the Dr. said my bones were really, really hard. I'm 58 and have Osteoporosis, how hard can they be?

#9 pammartin


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Posted 05 February 2016 - 05:02 PM

My first experience was awful. It was done in the local oncologist office and they never did get a sample.  My next one was completed at West Penn and before I knew it, they were done.  I have had two since at Cleveland Clinic, both times they were in and out before I really had time to get nervous. 


Cleveland told me to only allow a person to try twice.  It only frustrated the patient and the person trying to complete the BMB if it continues.  I have not had to experience anything past the initial 'poke' since my first time, but if I do, there will not be a third attempt.  Someone else can try.

#10 Sneezy12


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Posted 06 February 2016 - 08:35 AM

Hard Bones is indeed an excuse for poor sedation. Insist on a type of "conscious sedation". Be aggressive!

#11 SunNsand



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Posted 09 February 2016 - 12:51 AM

I noticed on my path report it noted peritrabecular areas and possible necrosis. A reticulin stain demonstrates abundant reticulum, estimated at 2+, with focal areas of 3+. This might explain any difficulty acquiring a decent aspirate, along with the fact that the marrow is essentially packed. In fact, a bone marrow aspirate particle clot section was not obtained.

SO, whatever that means, is the reason my Onc couldn't get the job done.

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