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Diagnosing CML from Blood Samples


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#1 LivingWellWithCML

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Posted 29 April 2012 - 09:26 AM

Hi everyone,

I was just following a few posts this morning and it got me thinking back to my diagnosis a year ago and how it all played out.  I was wondering if others had an experience like this and if it really is possible for experienced oncologists to make a confident call on CML and the phase before actually getting BMB/A results.

For my case, the initial event was a visit to my regular doctor after complaining about slower running and a weird "rushing" noise in my right ear.  Doctor said my running was slower because I was getting a little bit older (early 40's, really?), and the sound in my ear was due to fluid in my ear drum.  Regardless, he took blood just in case.  Doctor got bloodwork results back on a Saturday morning, freaked out, called my wife, had me report immediately to the ER to be re-tested (after running a 5K road race, oddly enough), then an oncologist at the ER visually analyzed the fresh blood sample under a microscope with the aid of an acute leukemia specialist and verbally told me within 90 minutes that they were 99% confident that it was CML chronic phase with no mention at all of the possibility of accelerated or blast crisis phase.  The whole ER deal is a bit of a surreal and blurred memory, but I recall asking how they were able to figure this out.  She said that they were able to make the determination by carefully examining the shape of the WBC in the sample (figuring out that they were CML cells), and they thought they saw "maybe" 1 or 2 blast cells in the sample because sometimes a couple can "leak out of the marrow".  So because the large amount of WBCs actually "looked" essentially normal in the blood sample, they were highly confident that it was chronic phase.  And I assume that they couldn't see Ph+ under the microscope, so somehow they figured it out from the shape of the cells themselves.  In addition, she said that my symptoms were quite vauge at the time and my spleen felt normal size, despite having 155,000 WBC.  I've always been grateful that these doctors were supposedly knowledgable and experienced enough to look for certain things in a blood sample with their own eyes and make correct assumptions about how the bone marrow biopsy results would turn out; so much so that the onc in the ER wrote me a prescription for Hydro / Allopurinol and told me to leave and resume my weekend as planned and just get the biopsy scheduled for sometime the upcoming week, because insurance would need it to approve the prescription for Gleevec.  But is this really possible to examine a diagnosis blood sample with experienced eyes to figure this stuff out with a fairly high degree of confidence?

Anyway, now that I know a decent amount about CML and how it's actually diagnosed, I've always questioned the ability of an oncologist of any experience level to diagnosis CML and phase through blood exclusively.  But these two folks nailed it right out the gate.

Anyway, just wondering...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#2 Susan61

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Posted 29 April 2012 - 03:42 PM

Hi Dan:  When I was diagnosed with my CML, they thought I had some kind of infection.  I worked in the Oncologists office, and we were allowed to get a blood test every 6 months free of charge. The lab was right on the premises, an owned by the doctors.  I was always faithful to get my tests, and even though my results came back at a WBC of 12, I insisted on a second test within a month.  It had gone up to 18, and I went to talk to the Oncologist.  He immediatelly scheduled me for the BMB that week.  I was hysterical, not thinking he would be so invasive so quick.  He said I cannot let you know what you have going on in your blood until I get some concrete answers for your diagnosis.  I got the BMB, and it came back CML.  My Spleen had not enlarged, and all was good.  Then we started with my treatment.

    Now I know people who have gone for a blood test, and the doctor assumed it was CML by the findings. These people have been put on TKI drugs, and have never had the BMB. I thought it was weird, and not a very good way of diagnosis.  I personally think everyone should get the BMB for the baseline of what is going on before starting a TKI or any kind of treatment.

   I can remember him saying to me that he had a patient who just ran very high counts,but did not have Leukemia.

He told me he would not diagnose me until he had the test results back, and for me not to worry until he told me what was going on.

  He was a great doctor. He also told me after he confirmed the CML that he wanted me to go see 2 more doctors for additional opinions before he started to treat me so that all 3 of them agreed on the next step.  They all consulted before I began my Interferon. That was the other issue,  There were no TKI drugs to put me on at that time.

  I miss him a lot since he retired 2 years ago.  The doctors who took over his practice are nothing like  him, and I no longer go to that office



#3 Floa7

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Posted 29 April 2012 - 05:08 PM

Hi Dan

I had buzzing in my right ear 2 years ago, ended up at the ENT doc. To which I had blood work and MRI of head and the ear. The MRI showed nothing wrong. The ENT doc put me on some vitamins. The buzzing comes and goes.

Last week it sounded like the wind was blowing 80 mph. Yesterday was fine, no buzzing at all. I got up this morning with the wind blowing 80 mph again. Dan does your ears still buzz?


1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 

 

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002


#4 Sneezy12

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Posted 29 April 2012 - 05:49 PM

Have the ENT check you for Tinnitus. There are special head manipulations that will help. Frank



#5 Lizzybee

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Posted 29 April 2012 - 09:26 PM

My onc diagnosed me correctly from day one based on the blood draw.  I had a "routine" physical one day, got a call the next morning to come in to see my doctor right away, and they had already scheduled an appt with an onc that afternoon because my wbc were 317k.  The onc came in the exam room and told me I had leukemia, explained the various types, and told me he thought I had CML.  He did the BMB right there at that first appt and 10 days later, the pathology report confirmed his diagnosis. 



#6 Susan61

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Posted 29 April 2012 - 10:17 PM

Hi:  Thats the way your diagnosis should go.  He knew by your blood work what was going on, but he still did the BMB to check everything else out.  I believe my Oncologist knew also, but without the further testing with the BMB to run the tests needed off the blood and marrow he was not going to tell me it was CML yet.

    Like I said there are people I know who are not in our group, who have never had a BMB and they are being treated for CML just from their blood draws. 

   Apparently every doctor is different in how they diagnose and treat, but like you said it was confirmed after the pathology was returned from the BMB.

   I hope this information we are all giving will be helpful to any newcomers looking for answers regarding their diagnosis, and how it should be confirmed.



#7 Trey

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Posted 29 April 2012 - 11:10 PM

They were guessing.  It was 99% sure you had either CML or AML.  The low blast count tipped the scales in favor of CML (with a WBC over 100K in AML you would often see more blast cells), but early stage AML would have still been a possibility.  The peripheral blood smear is not an accurate method for diagnosing CML vs AML, which is why most Oncs will not make a CML vs AML diagnosis until the BMB cytogenetics report is available, or at a minimum, have a FISH or PCR showing Ph+.  Even then there is a very rare Ph+ AML. 



#8 Mr._Bill

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Posted 30 April 2012 - 12:35 AM

Hi, my Oncologist informed me that FISH, and PCR could be done on either a blood or bone marrow sample for the purpose of an accurate diagnosis.

During my hospital stay at the U of M, they did a final  test using blood samples, and called me the day after I returned home to let me know

that as they suspected, I have PH+CML, and would start on Gleevec. There seems to be a difference of opinion among Oncs as to when a BMB is needed.

Pretreatment my WBC was 260,000. Gleevec, and now Tasigna have brought much of my counts to within expected normal range in a little over one month.

I know what you mean by your ER visit being kind of surreal. I went to the ER at my workplace due to my ankle and foot becoming so swollen after awhile

at work, I could hardly walk. This was on Christmas Eve 2011, so they did not take me seriously at first that I needed to be seen (it was slow there).

I told the ER doctor I had lost weight suddenly, and a few other things that made him decide to order CBC/CMP. When the lab tech came back to the ER,

the Doctor told me that I likely had a type of Leukemia, and consulted with Dr. Talpaz at the U of M. Due to the amount of abnormalities in the CBC, he

insisted that I be transported by ambulance to the U of M asap. So, what I thought would be a short visit to the ER, turned out to be a 2 and a half hour ride

in an ambulance to the U of M, where I spent a few days. I should add that Dr. Talpaz did recommend that I have a BMB once per year.

Best of luck to you and everyone here. 



#9 jenn

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Posted 30 April 2012 - 01:35 AM

my husband felt like s&*^..... went to the doctor.. who knows why they did a blood test ??? but they did...someone called @1000 pm......are u ok ? my husband um....no i feel like s*&^.. the angel says ....  u need to see a hematologist ASAP !!!  next day... no tests ,we were called in and told he had cml... later confirmed w/ bmb .. thank you angel, someone said she was out of line for calling to check up..and she should have reported direct to the doc..... thanks for the call,saved 5 weeks of referrals . a little snapping does a body good..



#10 LivingWellWithCML

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Posted 30 April 2012 - 12:11 PM

Hi Floa7,

No, not really - and my sensation was a distinct "whoosh ... whoosh" sound that aligned with my heartbeat.  I could literally hear blood flowing through my head - it was a very bizarre sensation, but apparently not life threatening.  As my WBC returned to a normal range with treatment, the sound gradually subsided.  I believe the sound was caused by thicker blood running through my head ... pretty scary thought now that I think back.

That said, I do feel some rushing in my ear after rigorous exercise in the heat, but that's more related to running at a high heart rate, because I've gotten that senasation my whole life.  My target heart rate when I run outdoors is around 135-140 bpm, so when it's 80 degrees outside, I'll feel it a bit during / afterward, then it goes away as I cool down.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#11 LivingWellWithCML

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Posted 30 April 2012 - 12:31 PM

@Trey, that makes sense ... and that's exactly what they were trying to figure out, because I remember they were trying to decide whether to admit me into the hospital, because the doc told my wife to pack stuff to prepare for an extended stay.  I guess the low/non-existent blast presentation made them err more on CML, and they decided to give it the benefit of the doubt and let me leave the ER.  I do remember a nurse coming in toward the end and telling me that I was going to be admitted ... then the onc came in about 10 minutes later, shrugged it off and said that I would be leaving ... of course, with the prescription of Hydro to get filled.  My understanding is that a higher blast cell count would've made it a more life-threatening situation because the blast cells are larger and clog up the blood and stuff, so I most certainly would've been admitted if they had seen that...


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#12 CallMeLucky

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Posted 30 April 2012 - 02:24 PM

My doctors were all very nonchalant about everything although my counts were not that high.  I initially got caught during a routine physical with WBC of about 35000.  I went back to repeat the test and it went to 45000.  I was referred to a hematologist and when I called the office they said they could see me in about 3 weeks.  I told them "I think I have leukemia shouldn't I come in sooner?"  The nurse told me they had no appointments for 3 weeks and "it should be fine" but if I didn't want to wait I should go to the ER.  I called back my GP who flipped out when I told her.  She made some phone calls and had me in with another hematologist that afternoon.  The hem/on ran a CBC in the office and my WBC had climbed to about 64000.  He took one look at the CBC and said "you have CML, I need to run genetic tests to confirm it but I can tell you now it's CML".  They took more blood and did a BMB.  Results were back about a week later, confirmed CML in chronic phase.  The doctor set me up for second opinion with a CML expert.  He said he could treat me but it was a rare disease and I should get a second opinion and then if I wanted to be treated locally he could monitor me but it was fine if I wanted to stick with the specialist.  They started me on Gleevec with Allopurinol until WBC dropped down to around 14000 and then they stopped the Allopurinol, that was a couple of weeks after starting Gleevec, been on Gleevec since then.  After meeting with the expert decided to stick with them, just made more sense since I had one available to me and it was within an hour or so from my house depending on traffic.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#13 Tedsey

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Posted 30 April 2012 - 02:30 PM

Phew!  I still get tinitius, (if that is what it is called), from time to time, but I am not an athlete.  It is normally at night that I experience the "thumping" which, I term, is down a knotch from the "whooshing", which was rather loud just before dx.  For example, a day before dx, I had loud rushing in my left ear, then some months after treatment, it calmed down to "thumping" or sometimes "popping", then it went away.  It has recently come back and seems to be tied to my jaw (esp. when I clench it).  My counts are low, but close to low average.  Although not life threatening, maybe it is damage from the high WBC circulating?  I have worked out hard in the past and never experienced such a sensation or sound despite an elevated heartbeat.  It is annoying to say the least.

Just curious, what ear did or do you all hear the sound in?

All the best,

Teds 



#14 Happycat

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Posted 30 April 2012 - 07:34 PM

Well, I was initially misdiagnosed due to a blood smear. My onc said he would have looked at my CBC (43K) and said it was most likely CML, but my blood smear had a high number of promyelocytes, which suggested APML.  But with the higher blood counts (APML would have low counts normally), they suspected an APML variant (different translocation) which had a much worse prognosis.  The fact I was bruising all over suggested I might be at a crisis point for APML called differentiated intravascular coagulation, which can lead to death by internal hemorrhaging. (You know you're in deep doo-doo when the nurse is looking at you and blinking back the tears.)

So, when looking to confirm, they looked for APML first, since that could have killed me in a couple of days (loved hearing that one). They did not check for CML until they had ruled out APML.

Thus, in my case, the CBC pointed one way, and the blood smear another way. If they went with the old way of diagnosis by CBC and blood smears alone, I would have been treated for APML first. So you can see why the standard is to confirm the diagnosis by cytogenetics.  As my onc said, sometimes patients present with some red herrings. The cytogenetics help clear those away.

Traci






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