16 replies to this topic

[mariebow]

  After my BMB and aspiration last year I seriously got Post traumatic syndrome, really no joke, I even skipped my doctors appt last month,because I knew that I was supposed to get my one year bmb and I just couldn't do it, and I know that Leukemia is a serious disease, so I had already told my dr that I am afraid to go through that again and wanted to have sedation, or something better than what I had last year which was just local anesthesia and  the pain did commence, my doc told me that my bones was so thick.   He thought that my insurance would not pay for a bone marrow biopsy in the hospital but I told them that I had already checked and they told me that they would just treat it as any othe outpatient procedure and that I was covered.  My husband worked in the goodyear tire industry for almost forty years and our insurance is pretty good about covering our medical expenses.   After I missed the feb appt my nurse called and said that my dr said that I could have it in the hospital, so I went to my appt in March and he knew that I had skipped my last month appt out of fear. So went in the hospital this morning and had the bmb and back at home with my sore behind.  But one thing I noticed I start hurting after the bmb and do not remember hurting like that afterwards, but my nurse gave me something for that.

[GerryL]

I had two BMBs, the second I think was done because I changed doctors and he just wanted his own info. My first BMB was with a local and the second was with light sedation, wound up with a sore hip for a day or two with both. Pain relief helped. Since then I haven't required another one and only get blood tests. Hopefully it will be the same for you.

[Antilogical]

My first BMB was pretty uncomfortable.  Just had my 1-year BMB, and after they probed for about 15 minutes trying to find a good spot to take the bone from, they called in a senior technician, who had me flip on my stomach, rather than the side.  After that, it was a piece of cake.  No pain - just pressure.  I have nothing but positive memories from this one.  Especially since the tests came back UNDETECTED!! 

[mariebow]

Thanks GerryL this is my wish.

[mariebow]

Glad that worked for you, that is something.

[Susan61]

Hi Marie:  Glad you had a better experience this time.  The pain is typical even when sedated.  I was pretty sore for about 2 weeks after I had mine.  I also was told that I was a hard stick when I had mine.  I have had with and without sedation, and I am so glad you pushed the issue to get it in a hospital setting. When I did the clinical trial for the Gleevec, they refused to let me have it done in the hospital.  I think I told about my rough time in previous postings.

If you have gotten to a CCYR, then they should be doing your testing through the blood test PCR now.  I only had BMB up until I got to a Ccyr, and have not had a BMB since 2001.  Is their a reason you still have to get a BMB?

Susan

[mariebow]

Susan I am not sure. But I do remember your bmb story.  And I am reading a story about a lady who had to have them much regularly and I am just in shock, that anyone would have to get them so often, I understand the exceptional circumstances, but I am a afraidy cat.

[LLawrence]

I also was traumatized by the bmb.  It was definitely worse than childbirth for me.  At my second visit with my oncologist (first with the bmb/sedation/local) my first question was "do you ever intend to do that again if things are going well?" His answer was thankfully no.  He retired and my first conversation with my new onc was the same and she also stated that as long as my pcr was good, there would not be another bmb.  If there is, it will be with anesthesia.

[mariebow]

How long have you had leukemia?

[LLawrence]

Not that long.  8 mos out from diagnosis.

[mariebow]

I hope we do not have to do that again.

[LLawrence]

Agreed.

[Susan61]

Hi Marie:  Did your doctor say that you could be tested by PCR blood test now?  I could not remember when you were diagnosed or at what stage your at with response at this point.  I hope your done with the BMB, and can just do a PCR test.

     I believe every new patient should get a BMB at diagnosis so they can see exactly what is going on.  I have known patients who never got a BMB, and have been getting PCR testing from the very beginning.  I have lost contact with them to see how they are doing at this point. Maybe someone on our board has done it that way.  I am curious.

    Every doctor seems to do things differently.

Susan

[mariebow]

Susan I was diagnosed in january 2012 started on tasigna in February.  I reach MMR at about the end of last year. No my dr have not mentioned a bmb next time or whether he need is just going to do the pcr.

[Susan61]

Hi Marie:  Have you been getting a PCR blood test , and if so how is it doing?  I would just ask him to start doing just the PCR being your are at MMR, and see what he says.  I am at PCRU for quite awhile.  When I saw the new Oncologist, he told me he needed a BMB on me to see if I had any mutations.  I told him that if I was at PCRU for 10 years at the time, and my Gleevec is working then there were no mutations to look for..  I told him if I had any mutations, then my TKI would not be doing the job its doing all these years.  I think he was new and just using me to make some money.  Maybe he needed the practice, but it was not going to be on me. Thats when I walked out the door, and never went back.  I heard later on that a lot of the patients left him also.

[mariebow]

yes susan61 I think I have lol.  i go for a blood check and checkup every 3 months but this last time it was four months because I did not have the nerve to go last month.  He knows that I hate the bmb but I will ask about just taking the blood test. I am all for it.

[Susan61]

Hi Marie:  I go for a routine blood work every 3 months, just to check my counts etc.  Then every 6th month blood test I get the PCR test along with the regular blood work. So I am only getting a PCR test twice a year.  I get a slip to go to the lab.  I do not get it done in the office.  My slip says PCR bcr/abl along with everything else she wants.

I really wish you the best.  I do not blame you for not wanting the BMB.  I think you are doing very well.

Ask the doctor anything you want.  You have every right to do that.  Whenever I feel nervous about going for any appointment with a doctor.  I write down all my questions on a piece of paper, and this way I do not forget when I get in there to ask what I want.