50 replies to this topic

[Dona_B]

Conducting a survey. How many BMB have you had per year? And the commulative total since diagnosis?

 

It's that time again--the quarterly appointment with my onc. It's been not quite 14 months and I've had two BMBs and he wants to do a third. I was able to postpone it last quarter but he think's it's the only way to tell if I reach CML remission. I probably wouldn't mind so much if I didn't already have back issues. Personally as long as the BCR-ABL numbers continue to come down, I don't think it's necessary.

 

Bonus question does any one else have almost unbearable back pain when on feet for more than a few hours? Familiar with the bone pain as side effects but seems like it would show up other places as well.

 

I don't know if the back issues are preexisting from a herniated disk and bulging disks (last MRI over a year ago said they were resolving), other hereditary, Sprycel bone pain, or from BMB.  If my back gets any worse, it's going to be a quantity of life vs quality. Between my back issues and certain female issues I'll spare you,  CML seems minor in comparison.

 

[rcase13]

Diagnosed 10/2014
One BMB so far. Wasn't too bad. The nurse said I can let her do it or the doctor could do it. She said if I do it there will be very little discomfort. She said the doctor would not be as careful. I let her do it and it was not too bad.

[JPD]

One, right after diagnosis, Nov 2013.  Last PCR .50%.

 

is another in order?

[soundoff]

I wouldn't do it. PCR test is fine. But that's just me....

[Floa7]

My son was diagnosed, Nov 2012, He had one right after diagnosis.

 

I was diagnosed in Jan 2013, I have had only one BMB when diagnosed. Doc numbed my hip, First two times were ok but the third attempt to get more bone marrow, do I need too say more the numbing had wore off.. 

 

We both went resistant to Gleevec. He is on Sprycel and I am now on Tasigna. I get blood work in 3 weeks.

 

I was already reading this site by the time I got diagnosed.

[Dana]

I have only had one right after diagnosis and that has been 12 years ago.

[pammartin]

I have had 3 in 3 years. First was at diagnosis, last two were when I changed oncologists and facilites. Both West Penn & Cleveland Clinic wanted their own results although they did review previous slides.

[Antilogical]

Diagnosis: 02/2012

BMB:  02/2012

BMB:  02/2013

 

According to my hem/onc, a BMB at diagnosis and at 1 year are all that is needed, unless a mutation is suspected.

 

My neighbor also has CML, and has a different hem/onc in the same hospital/insurance system.  He has NEVER had a BMB.  His doc just uses the PCR test.

[Trey]

 A BMB is useless after CCyR / 2 log reduction PCR (1.0% IS) / zero FISH. 

[Dom]

I had one at diagnosis, but it was only a bone marrow aspiration, much less painful because, as I undberstand it, it does not chip the bone itself. He suggested another bnb (or bma?) one year later, which is this month, but is backing off now because the pcr test doesn't warrant it. I'm surprised the op is getting a third.

[Trey]

Just to clarify BMB vs BMA, a BMA (aspiration) can be done without taking a core sample of marrow and bone, but I don't know why that would be done without also doing a BMB core sample.  To get an aspirate sample a hole must be punctured into the hip bone to suck out fluid.  That puncturing is also what a core sample for cytogenetics analysis (bone core/chip) does, but it takes a very tiny bit of bone and marrow structure with it as a core sample.  A smaller aspirate needle can be used, but to what purpose?  Doing that without a marrow core sample at the same time does not make much sense.  Both feel about the same, and both puncture the bone. 

[Billie Murawski]

One BMB at dx 2007

[Buzzm1]

the first and the last, Feb. 2010 ... 

[PhilB]

One at diagnosis and another about 6 months later.  No point in having more if you have a good response.  My first was literally at diagnosis - ten minutes after the doctor I thought was going to tell me I had flu told me I had Leukaemia.  I have to say the shock worked very well as an anaesthetic.

If you want to feel like a wimp, wait until someone who was in the early trials comes along and tells you how many they had!

[Tedsey]

3 or 4 in the last 5 years. Hmmm. I always thought that was a lot. As horrible as they were with just a local, it is curious that I cannot remember the exact number. But at the very least, 3.

[Lucas]

just one bmb - at dx - but had a bma at 3 months, 7 months and 12 months (CCyR finally!). Now, because of the trisomy 8 in the ph negative cells i'll have to have 1 bma per year.

[Cathy]

Hi, I've had 3 in 4 1/2 years

 

Cathy

[nanakrauss2]

One at diagnosis and one 18 months later. None since. Diagnosed in 2003. PCRU for over nine years.

 

Nancy

[Marnie]

2 - one at diagnosis and one a few years later with new oncologist and after switching to Sprycel. 

[Dom]

Thanks, Trey, for the feedback.  Let me follow up, even though it is off-topic a little.

 

My oncologist went with bma instead of bmb because the previous month I had a stent surgery and I was still on blood thinners.  The hospital would not allow bmb for insurance reasons.  It was the administrators who said a bma was less likely to cause internal bleeding, and the oncologist went along with that.  He did say, however, that the only information he needed came from the aspiration.

 

I was prepared for the bma by a nurse who told me all sorts of horror stories about bleeding and black and blue marks etc, but when I informed her that it was only a bma she said, "That's much simpler".