15 replies to this topic

[JohnFromChicago]

Last week I had my month 15 checkup and PCR. I received the results last night. I was very happy to see that my PCR reduced from 0.21 to 0.15. Since on my last PCR I had very little progress with the result of .21 down from .26 I considered this to be great news. My onc is pleased with the result but suggested that I have a second BMB done. She seems to be leaving it up to me to decide If I want to have one. I have only had one BMB which was done at diagnosis since then I have only had CBC and PCR. I don't mind having another if it is necessary but I certainly don't want to spend the money and go through the pain if it is not really useful. One thing I have started to wonder after reading through other people's results on this forum is if I should have had a more in depth CBC that includes blasts since mine does not. This seems like more the standard than a 15 month BMB. It seems to me that I am clearly in CCYR based on my PCR, but maybe there is more to this than I am aware of. Any input would be greatly appreciated.

[scuba]

What did your first BMB show? Any abnormalities beyond bcr-abl breakpoint? 

[Red Cross Kirk]

John,  my onc did a PCR and BMB one year after diagnosis. The PCR result was 0.360%, and the bone marrow biopsy result was "normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy".  I'd guess that your results would be similar, given your current PCR result.  If I knew then what I know now,  I probably would have passed on that BMB.

[JohnFromChicago]

What did your first BMB show? Any abnormalities beyond bcr-abl breakpoint? 

 

I did have two breakpoints P210(b2a2) and P190. I was negative for the JAK2V617F and had 1% blasts. My P190 came back negative at both my month 3 and month 6 PCR. They stopped testing for it after that.

[JohnFromChicago]

Attached are the results of my BMB from diagnosis based on my analysis it looks thankfully like a boring, garden variety, CML BMB before treatment but maybe Trey or Scuba could verify.

Attached Files

•  1.png   773.69KB   0 downloads
•  2.jpg   186.05KB   1 downloads
•  3.jpg   128.75KB   1 downloads
•  4.jpg   72.73KB   1 downloads
•  5.png   291.06KB   0 downloads

[JohnFromChicago]

John,  my onc did a PCR and BMB one year after diagnosis. The PCR result was 0.360%, and the bone marrow biopsy result was "normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy".  I'd guess that your results would be similar, given your current PCR result.  If I knew then what I know now,  I probably would have passed on that BMB.

 

Thanks for the info. I am also leaning towards passing on this BMB since my Oncologist seems to be giving me the option. I would assume this would not be something she would allow me to decide on if it was really necessary. Maybe it is something like a protocol that the hospital requires oncologists suggest to all CML patients at the one year mark. I would hope it's not protocol to suggest it to patients who do not really need it in hopes of raising funds but who knows. I would rather just donate $300 and skip the drilling into my back

[scuba]

John, 

 

You don't need a BMB. Your diagnosis BMB report is typical for CML. No other abnormalities seen. Unless you like having a BMB, want to spend $300 getting one, there is a very high chance (99.99%) that your BMB report will reflect no change (except bcr-abl will no longer be seen) and have no impact on your ongoing Tasigna protocol.

 

In any event, you could easily wait until your next PCR (18 month) test and verify your downward trend before deciding to go through with a BMB. That will give you peace of mind.

[JohnFromChicago]

John, 

 

You don't need a BMB. Your diagnosis BMB report is typical for CML. No other abnormalities seen. Unless you like having a BMB, want to spend $300 getting one, there is a very high chance (99.99%) that your BMB report will reflect no change (except bcr-abl will no longer be seen) and have no impact on your ongoing Tasigna protocol.

 

In any event, you could easily wait until your next PCR (18 month) test and verify your downward trend before deciding to go through with a BMB. That will give you peace of mind.

 

Thanks scuba, Im glad you concur with my amature analysis! I like to think of my TKI as working at a sloedium(slow-medium) but steady pace so I would estimate that my next PCR will be .11 followed by a .07...there I go trying to plot PCR trends again (my pseudo-mathematics)  .

[cmljax]

NCCN guidelines call for BMB if not MMR within 12 months, but you are essentially there and the trend is still positive. Very unlikely that a BMB would tell you anything you don't already know.  I certainly wouldn't do it now.

[thatguy]

Funny, I just had this same question. I had my doc contact me a few weeks ago saying that Banner (the hospital I went to for transplant evaluation 1 year ago) wanted anther bmb (this was number 3) to "keep me eligible for transplant".I was ccyr on the bmb 1 year ago, and my pcrs have remained lower than what they were at that point as well. Reluctantly I went yesterday to doc and had a local anesthetic bmb, and a pcr, minus the demerol, with what I'd describe as a tire patch reamer. Just prior to starting, the p.a was like " if you don't want it I can stop right here" , after she agreed that she didn't know why we were doing it, and said that Banner had contacted them saying i was almost ready for transplant, which echoed an email i recieved from them as well, out of the blue... Hoping this was simply a mistake or sales tactic, and not divine intervention! I went ahead with it though.

Btw, manual bmb's suck, especially without an opiate or narcotic!

[JohnFromChicago]

Funny, I just had this same question. I had my doc contact me a few weeks ago saying that Banner (the hospital I went to for transplant evaluation 1 year ago) wanted anther bmb (this was number 3) to "keep me eligible for transplant".I was ccyr on the bmb 1 year ago, and my pcrs have remained lower than what they were at that point as well. Reluctantly I went yesterday to doc and had a local anesthetic bmb, and a pcr, minus the demerol, with what I'd describe as a tire patch reamer. Just prior to starting, the p.a was like " if you don't want it I can stop right here" , after she agreed that she didn't know why we were doing it, and said that Banner had contacted them saying i was almost ready for transplant, which echoed an email i recieved from them as well, out of the blue... Hoping this was simply a mistake or sales tactic, and not divine intervention! I went ahead with it though.

Btw, manual bmb's suck, especially without an opiate or narcotic!

 

Ouch, 3bmbs in 2years! I only had the one at diagnosis it was very painful, they only gave me a local anesthetic shot for it. The doctor who did mine used a hand tool. He was an older gentleman in his 60s he said mine was the most difficult BMB he had ever done and he had never done one on someone under the age of 40 and he claimed the younger you are the more difficult it is to pull a sample. I could hear him making groans and losing his breath at one point I thought he might pass out, he really had to put all of his muscle into it. I asked for a pill or IV pain killer before they started but they said I could not have one although I don't remember there reasoning. It was a small oncologist office late at night in the small town where my parents live so maybe they just didn't want to wait around for a painkiller to kick in. Now I go to a large highly rated hospital in Chicago, I assume they probably have more options for pain control, but I rather not spend the money or waste a vacation day having one since my onc isn't really pushing it that hard. I'm going to wait for my next PCR in 3 months and if there is any amount of increase I will schedule one ASAP but i'm hoping/assuming that will not be the case.

[thatguy]

Then you know! Yeah she kept "slipping off the spot" yesterday and finally got it after she sent for someone else. And that syringe for the aspirate....ooof. She said they couldn't numb the bone interior, but I'd argue demerol did a FINE job for my CT guided ones...lol.

[gerry]

For my original BMB with local, I got told to breathe through it like I was in labour. I said I preferred to just keep saying ouch. :-)

[Trey]

John,

No reason to have a BMB done.

[JohnFromChicago]

John,

No reason to have a BMB done.

 

Thanks for the reassurance Trey!

[JohnFromChicago]

Then you know! Yeah she kept "slipping off the spot" yesterday and finally got it after she sent for someone else. And that syringe for the aspirate....ooof. She said they couldn't numb the bone interior, but I'd argue demerol did a FINE job for my CT guided ones...lol.

 

I have never had demerol before but it sounds like that did the trick for ya haha. I had dilaudid once after being in a motorcycle accident but that would probably be overkill for a BMB haha. If I ever had another one I would prefer to be at least partially unconscious like they do for wisdom teeth. When I had this done during college I remember it being completely painless (during the procedure) and a few hours after the procedure I was seemingly back to normal and able to get some homework done and drove my car that night without issues.