Hi all,
I read Trey's welcome blog for newbies where he mentions getting a bmb when CML is confirmed.
I thought this was standard, but my doctor did not do this. Have most of you had this done?
To BMB or not to BMB ... That is the question
Started by
Lisa Lisa
, Apr 03 2015 11:47 AM
Bmb Cml Newly diagnosed
18 replies to this topic
#1
Lisa Lisa
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Posted 03 April 2015 - 11:47 AM
Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15
22% 5/15 0.13% 6/15 PCRU attained 9/15
Initial dose Sprycel 100 mg 3/15 Lowered 80 mg 5/15 Lowered 50 mg 1/16
Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage
Sprycel: Currently 50 mg per day - taken 10 pm
#2
Dom
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Posted 03 April 2015 - 02:27 PM
I had it at the beginning, and I was told he would need another bmb after one year. But it's been a year, and now he says he does not need it. I'm not sure if that's because my blood tests don't warrant it, or because I had a stent operation a year ago, and he's afraid of complications. Also, the first bmb turned out to be a bma instead, because of the surgery.
My impression is that an onc does not always go by the book. Maybe your onc decided against it. I have to admit that having no bmb seems odd, but I have limited experience on these things.
My impression is that an onc does not always go by the book. Maybe your onc decided against it. I have to admit that having no bmb seems odd, but I have limited experience on these things.
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
#3
JPD
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Posted 03 April 2015 - 06:04 PM
you need a BMB, IMO
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
#4
dede5
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Posted 03 April 2015 - 09:36 PM
Doc diagnosed leukemia from blood work. Then, I had a BMB to confirm and (I thought) to find out which kind. I had another one a year later. Not sure what it was for.
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest 
#5
Billie Murawski
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Posted 03 April 2015 - 09:48 PM
I thought a bmb & bma had to be done at first to confirm dx. And that should be the only bmb required.
#6
Lisa Lisa
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Posted 04 April 2015 - 08:00 AM
I know the PCR and FISH were done. PCR both quantitative and qualitative tests. But no BMB. Not that I want the added pain/test, but I thought that was standard practice.
Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15
22% 5/15 0.13% 6/15 PCRU attained 9/15
Initial dose Sprycel 100 mg 3/15 Lowered 80 mg 5/15 Lowered 50 mg 1/16
Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage
Sprycel: Currently 50 mg per day - taken 10 pm
#7
Trey
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Posted 04 April 2015 - 08:24 AM
A BMB at diagnosis is indeed standard practice. The key word in BMB is "biopsy". If a solid tumor in the body is found by imaging, would the doc refuse to do a biopsy, which is the only way to understand the tumor? A person can be diagnosed with CML without a BMB (PCR and FISH), but there is no way to know the nature of the CML or the "severity" (Phase, secondary mutations, marrow cell characteristics, fibrosis, etc) without a BMB.
Edited by Trey, 04 April 2015 - 08:24 AM.
#8
Dona_B
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Posted 04 April 2015 - 03:43 PM
I had one at diagnosis January 2014, one in May 2014, and have been fighting the third one since last November. My onc. claims he needs it to monitor the Phil. Chromosome. Hopefully since I've reached another milestone a couple of months ago, he'll lay off. 
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17
#9
Pin
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Posted 04 April 2015 - 06:10 PM
I had one at diagnosis only
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#10
Billie Murawski
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Posted 04 April 2015 - 10:44 PM
Hi LL, Just say no!!
#11
dede5
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Posted 05 April 2015 - 07:57 AM
I was initially told I would have to have one every year. There's a way to make you feel worse than you already do. Thankfully, though, it's never been mentioned again after the second one and I'm sure not gonna bring it up! 
Dx: 01 March 2011
Sprycel 100 mg per day since dx
MMR: July 2013
numerous side effects
Thankful for the gift of each new day, and try to live it to the fullest
#12
JPD
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Posted 05 April 2015 - 09:21 AM
I really didnt mind my BMB. Guess I got off lucky.
January 15: .53%
April 15: .78%
July 15: 1.1% - upped dosage to 400mg after this test
Oct 15: .85%
December 15: .28%
March 16: .29%
July 16: .34%
October 16: .11%
January 17: .081%
April 17: .055%
July 17: .135%
Oct 17: .008%
#13
Kittywatkins
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Posted 05 April 2015 - 06:12 PM
I had two done..one to confirm it was chronic. The second I have no idea why..It was the worst pain I ever experienced! Never again! Unless they knock me out!
#14
Lisa Lisa
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Posted 05 April 2015 - 06:40 PM
Kitty, that is crazy that you go to Sloan and so do I, yet I had to bring it up to my doctor. I dont get it.
Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15
22% 5/15 0.13% 6/15 PCRU attained 9/15
Initial dose Sprycel 100 mg 3/15 Lowered 80 mg 5/15 Lowered 50 mg 1/16
Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage
Sprycel: Currently 50 mg per day - taken 10 pm
#15
Dom
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Posted 05 April 2015 - 07:00 PM
I never had a bmb, only one bma, and I agree with JPD, it was not painful, only weird feeling. The attending nurse said the bma will of be as painful as a bmb. My onc said the bma gave him all the information he needed.
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
#16
Damerault
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Posted 06 April 2015 - 10:26 PM
I have had three BMPs. One at diagnosis and two since.
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
#17
Lisa Lisa
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Posted 07 April 2015 - 12:27 PM
Billie, tell me!Hi LL, Just say no!!
Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15
22% 5/15 0.13% 6/15 PCRU attained 9/15
Initial dose Sprycel 100 mg 3/15 Lowered 80 mg 5/15 Lowered 50 mg 1/16
Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage
Sprycel: Currently 50 mg per day - taken 10 pm
#18
hannibellemo
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Posted 08 April 2015 - 08:18 AM
Hi LL, Just say no!!
Lisa,
I think Billie meant this to refer to Dona_B. Not you. She was wondering why her onc wanted to do a BMB everytime for PCR, which is not necessary. You, Lisa, should have had a BMB at dx..
Billie,
Correct me if I am wrong.
Pat
"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>
#19
Billie Murawski
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Posted 08 April 2015 - 12:48 PM
Lisa,
I think Billie meant this to refer to Dona_B. Not you. She was wondering why her onc wanted to do a BMB everytime for PCR, which is not necessary. You, Lisa, should have had a BMB at dx..
Billie,
Correct me if I am wrong.
You're right Pat, sorry about the confusion LL, on the other hand you can say no to anything you want to because we're a special breed. (No cooking no cleaning no laundry)etc. Billie
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