17 replies to this topic

[martap999]

hi everybody- I have a question - my onc told me today that my numbers are not going down (may - .62 / July - .79 ) - I was diagnosed in March 2015 and put on Sprycel- in Jan 2016 I was switched to tasigna because the onc was not happy with my progress on Sprycel - my numbers have never fallen below .590 - he wants to do a BMB to eliminate possible mutation - my question is as follows: what does a mutation imply ? - what is the next course of action if they find a mutation? - if they find some kind of mutation can I eventually reach MMR or does that complicate the treatment? - thank you all for helping me out - I'm a little stressed!! Marta

[CML2012]

A mutation is when the disease changes form. My numbers have when up twice (see my signature) and both times the mutation test have come by negative - neither time was a BMB just a blood draw. Others on the board are more knowledgeable than I am.

[Trey]

There are two main types of mutations discussed in relation to CML treatment.  One is a chromosome mutation, and the other is a kinase mutation.  Chromosome mutations are found through a BMB, and kinase mutations are found with a blood draw.  Chromosome mutations include the Philadelphia Chromosome itself, as well as others such as trisomy 8, monosomy 7 and others.  These secondary chromosome mutations do not automatically reduce TKI drug effectiveness, and some may even be caused by the TKI drug itself.  Kinase mutations are in the BCR-ABL messenger signals (mRNA) inside the leukemic cells, and they can sometimes prevent or hinder the TKI drug from binding to the BCR-ABL mRNA, which reduces TKI drug effectiveness. 

 

So if your Onc is discussing a BMB, he is looking for a chromosome mutation which might explain a suboptimal response.  For those who had a BMB at diagnosis, a BMB at this point would probably not be very useful unless loss of CCyR occurs.  A kinase mutation test is more useful, but you are CCyR so it probably will not work anyway. 

 

Most suboptimal drug response is not caused by mutations of any type, but is caused by other issues.  Some day I will post about this issue separately.  It is a difficult subject area to cover and there are many unknowns, which is why I have not done this yet.  The summary is the reasons are "patient specific" and difficult to identify.

[CallMeLucky]

In addition if it were determined that there was a mutation, different TKI drugs work better on each mutation.  So the Onc is looking to see if there is a reason why you are not responding as optimally as he would like and if there is a specific reason why they can focus on it more directly.

 

[martap999]

Thank you all for answering my questions- I have never had a BMB - the doctor does not do it under sedation but rather with local - I have heard that without sedation it is "barbaric" I have also heard that it's really not a "big deal"- can it possibly be both ????-

[CML2012]

I am sorry to say but "barbaric" is the best description. I will be sedated if I have to have another one!!!

[Antilogical]

For me, the BMB was not a big deal.  Both of mine (at diagnosis and at 1 year) were done with a local.

[beno]

Mine wasn't bad at all. They gave me a local and also a mild sedative so I could stay relaxed. My wife also had one and she couldn't do it. They had to put her under anesthesia. I think it varies from person to person. It might vary depending on who does it also. A nurse told me the PA who did mine was the best ever, so there's that.

[Gail's]

I've had 2 bmb in my cml career. First was tolerable, didn't take the prescribed pre procedure medication but pretty sore for a few days after. So when I needed 2nd bmb, I took the pre meds and it was not fun at all. It was the first experience for the dr who was observing but the NP did most of the work. I doubt I'll need one again, but if so, I will ask for sedation.

[Marnie]

i've had 2 BMBs with local anesthetic.  They were uncomfortable, but not barbaric.  I prefer not to be sedated.

[AdamJ]

For me it was certainly "barbaric" and I will ask for sedation if I need to do another one.

[Trey]

The issue is 99% mental.  The actual procedure is not painful, although you can feel the person doing the procedure (pressing on the pelvis, etc).  The problem occurs when people think too much about what is happening -- same as with dental procedures.  That is why I urge people to listen to a personal music device while having the BMB done.  It is only a bad experience if the person makes it that way mentally.  After the BMB is done and the sedation wears off there can be some pain, but that is a separate issue.

[CML2012]

Trey I think you are awesome and I have learned so much from you but when they did my BMB it felt like they where pulling the bone marrorw from my toes to my hip and oh my did it hurt. Just saying.

[Trey]

Agree that there is a momentary feeling of having the marrow sucked out of you.  Very odd feeling.

 

Overall I do not understand why anyone with CML would not have a BMB done at diagnosis.  But if not done then, if the patient does not respond optimally, then one should be done at that point.  Pain is pain, but a BMB can provide information that cannot ever be obtained any other way.  This disease is just too important to avoid something that is so important. 

[CallMeLucky]

Had three since dx. I wouldn't say they were fun but never thought they were that bad. Like anything else I think it depends how good the person is. I had two by doctors and one by a tech. By far the tech was the best. I would say the soreness afterwards was more annoying than the actual procedure.

[rcase13]

CallMeLucky your story reminds me of mine. They gave me the choice of the doctor doing it or the physician assistant. The PA warned me that the doctors aren't good at it. So I picked the PA. It was relatively painless.

[Melanie]

I've had 14 BMB, most of them because of the drug trial I'm in. My first one was at dx and with a local and it felt barbaric to me...I definitely felt it! The 2nd was under sedation and so much better! The 3rd was also under sedation, but afterwards I was very bruised and incredibly sore. They said they had "difficulties". Since then, I've been in the trial and had the rest done with a local and by techs, which is all they do. What a difference! When the experts do it, it's just uncomfortable and a lot of pressure, with some soreness afterwards. This last one I had was a trainee, she missed and I almost flew off the table. Expert took over and the rest went well. It's all in who's doing it. Go for the most experienced tech and you should be fine. The information they get from it is worth it!

[r06ue1]

Only one was at diagnosis, had the anxiety med and local anesthesia, didn't really notice anything other than pressure.  The local anesthesia was more painful.  After the anesthesia wears off though your backside can be quite sore for a while, maybe a week.  I can still see a small point where they did the procedure.  After getting it done, get a cushion to prop up behind your back to keep your local back from touching anything when you sit and you'll be fine.