21 replies to this topic

[lopez.troop]

. Hi everyone. I was dx last month on 3/26/2014 so I am new to all of this. I am wondering if a bone marrow biopsy/aspiration is  necessary for CML diagnosis and  treatment monitoring? My hem/onc is highly regarded in the medical community as a hematology expert but has done all my CML testing using the peripheral blood and not actual bone marrow as this is the usual course he takes with all  of his CML patients.  My hem/onc has stated that my PCR testing will all be done using the peripheral blood and he usually orders a biopsy if I stop responding to treatment or run into complications at some point. Should I be concerned?

Thank you,

Jerry

[JPD]

I think almost all of us had one, so as to whether or not it's neccesary I dont know, but it sure seems like its the standard procedure.

[mikefromillinois]

My doc told me that a bone marrow biopsy was standard practice at the time of initial diagnosis to get a better handle on the progression of the disease and so on, and then a BMB was usually not necessary again as long as treatment goes well.

[Trey]

A BMB should always be done for a complete and proper diagnosis of CML.  Your Onc is ignoring the NCCN Guidelines for CML Treatment (see link below).  The BMB checks for issues which cannot otherwise be determined through peripheral blood, such as secondary chromosome  mutations, high blast count (immature WBCs),  marrow fibrosis, abnormal cell morphology (shapes and sizes),  etc. So a BMB provides information which is otherwise not obtainable. 

Having said that, if a person is diagnosed in early Chronic Phase CML the risks of these secondary issues is small, so the risk is not as great.  So if a BMB is not done there are risks, but they are less if diagnosed early. 

http://www.nccn.org/.../cml/index.html

[lopez.troop]

Thank you everyone for the great feedback. I appreciate everyone taking the time to respond to my concerns. I will be speaking with my hematologist/ oncologist about it this week. And yes I was dx in chronic phase cml.-jerry

[RayT]

Hi, Jerry!  Looking at your nickname and avatar, I have to ask if you're on the job.  I'm a tactical medic with a County Sheriff's Office in NY.  I'd love to chat with an LE brother who's dealing with CML, especially about job-related issues.

I was just Dx'd in January, on Gleevec < 3 months.  If you have the BMB, ask about having it done under conscious sedation (like having a colonoscopy.)  Usually done with Versed (midazolam.)  You're still awake but don't remember anything.  I've had BMBs with and without sedation. I'll NEVER do it without again.  (I HATE needles, unless I'm the one holding it.  I can dish it out, but can't take it... )

[shelley71]

Jerry,

My hematologist said the same thing, that they can see everything they need to see in peripheral blood now. I was dx'ed in March also, caught early, and in chronic phase. I am still getting the read on my hematologist's experience (and I am very choosy about who I stick with for my doctors!), but my sense is that he researches CML pretty well. He does a smear to look at the cells and see what types are there.

Good luck, hope you are settling into this bizarre journey, especially with all of the info there is to digest!

Shelley

[Susan61]

Hi Jerry:  Trey explained it all to you, and what Ray said is also true.  There are so many doctors just doing the PCR testing, and not doing the initial work-up at diagnosis with the BMB.  Definitely ask your doctor about this.

I used to get a BMB every 3 months until I achieved a cytogenetic remission, then I was able to start doing just the PCR test with the simple blood test.

Susan

[tiredblood]

My hematologist/oncologist diagnosed me without BMB as well. Unless there are problems down the road, I don't think he will be doing a BMB on me, just the PCR which detects 1 abnormal cell within 100,000 normal cells.  FWIW, he is from a teaching hospital and doesn't feel a BMB is necessary.

[Trey]

CML diagnosis can be made without a BMB, HOWEVER A BMB can see things that peripheral blood tests cannot see -- period, exclamation point.  Only a BMB actually looks at the chromosomes themselves in real life as they truly are, and only the marrow can show fibrosis levels and some other issues.  Whether the risk of not having a BMB is high or low is another issue, and some may believe it is an acceptable risk to avoid one; so that portion of the issue can be debated rationally.  So although a patient can be diagnosed as having CML without a BMB, the diagnosis is incomplete without one.  For instance, without a BMB the patient will not know if there are other chromosome abnormalities (trisomy 8 or monosomy 7 being two primary issues).  Any Onc who does not perform a BMB for diagnosis is ignoring the generally accepted best practices found in the NCCN Guidelines for Treatment of CML. 

[tiredblood]

Page 11 in the NCCN Guidelines for Treatment:  Chronic Myelogenous Leukemia states, "Not every person with chronic myelogenous leukemia will receive every test listed."  So, I think it is a little disingenuous to say that any oncologist who does not perform BMB is ignoring the best practices found in the NCCN Guidelines for treatment of CML or insinuating that someone has not received a complete and proper diagnosis of CML.  My guess is that most oncologist don' t use the patient guideline booklet except for patient education.

[jjg]

Yes the patient guideline booklet is for patients. If you create a profile on the nccn website you can read the 2014 physician version. It says the following:

"Bone marrow should be done for the initial workup, not only to provide morphologic review, but also to detect chromosomal abnormalities that are not detectable on peripheral blood FISH"

Is just using a PCR adequate care - probably in most cases. Does it save money - yes. Does it avoid something unpleasant in the short term - yes - in the long term - hopefully. Do we all want to be able to believe 100% in our doctors - of course, we've been dx with cancer.

[GerryL]

Hi tiredblood,

Welcome to the forum.

Have a read of page 17 of the guidelines under Bone marrow cytogenetics, it comments that the preference is for a BMB. If anything starts to go wrong in your treatment, I'm sure your doc will be scheduling you in for a BMB.

If you're happy with your doc, that's the main thing.

[GerryL]

Hi trey,

I figure some of the change to procedure are due to how well our TKIs work, some docs may figure they will only need to look to do BMBs if things start to go off the rails.

I'm not sure that I really needed to have my second BMB other than when I changed to my new doc, he felt the need to check things out for himself. I was okay with it. Over time I have got him to review some of his practices, eg dropping dosage and now stopping TKIs. I just got my results, another negative, which takes me over the six months for stopping. I did a little happy dance. I will say that you were correct, as usual, on waiting on results once you've stopped, it is slightly worse than my first two years of PCRU. LOL I still need to stay on guard for the next two years, but hopefully will be a bit more relaxed about test time.

[0vercast]

Let's be honest, CML is a little frightening, in and of itself. It's cancer, after all. It'd be an even more frightening journey without use of the best possible medical diagnostic and treatment procedures available.

I'd be a little wary of any doctor that's willing to let a patient go without one. That's opening the door to doubt and uncertainty. Not exactly the most sound practice, scientifically speaking.

BMBs are nothing to be feared. They don't hurt any worse than having a cavity filled. Some folks are terrified of these things, while others take a more "ho hum" approach. You never know until you try. I see them as necessary evils; the "new normal," so to speak.

[nia.435]

  

I think that not all tests are essential for the diagnosis of CML, but I would agree with Trey that a BMB is one of the most essential tests needed for the proper diagnosis of CML.  It not only shows additional chromosomal abnormalities besides the Philadelphia Chromosome, but also shows the overall condition of the bone marrow, as Trey pointed out.  I know my haematologist always insists on having a BMB at diagnosis, 3, 6, and at 12 months until CCyR is attained and then only rarely, even for those patients that are diagnosed in early CP. I personally would insist on having a BMB at diagnosis with subsequent BMB's till CCyR is attained.

Vanessa

[Pin]

That's what it sounds like - I remember my doctor saying that they do all monitoring now with PB. I had a BMB at diagnosis and haven't had one since. I guess this is an extension of that thinking. I'm not sure I agree just yet, I'd need some evidence demonstrating that not finding out (further) abnormalities at diagnosis and waiting until problems show up before checking has no negative clinical outcomes for patients.

Anyway.... Congratulations on the fantastic news!!!!

[PhilB]

While I'd agree that the BMB is the only way to show up other things, I'm less sure that knowing about those things would actually change the treatment, eg with marrow fibrosis the usual treatment always seems to be 'take your TKI and it should go away'.

I would not be too surprised to see the guidelines change at some point such that a BMB is only done in cases of poor response.

[GerryL]

Thanks Pin,

Now we just have for your next test result, hoping it's a negative for you.

[tiredblood]

I went to my hem/onc the other day and he pretty much said what you said, PhilB.  He is also looking (sort of a retake) at the guidelines that Trey mentioned.   We logged in on his laptop during my visit.  He works alongside one of the contributors/collaborative team members (term?) that developed the NCCN guidelines.  I'll be interested to hear about their conversation if they have one.  I really like my doctor-- it's like we are a team in my health care.

6 months out and still have a major molecular response \o/ \o/ \o/  0.000%