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Not Dx yet, but really worried


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#1 aamonsmom

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Posted 24 August 2012 - 06:12 PM

Hello

I have been concerned that something was wrong for a while now. I've had an elevated WBC for a couple years and they never could figure out what was wrong. So they finally did some tests and now I am worried. I got my answers as far as the Jak2 mutation (none detected) from reading the posts so that helped. My biggest issue is that I'm pregnant so its a little scary knowing that they are checking for CML. I know they are doing other tests but I am not sure what to think.  I've had the night sweats, the bone and joint pain, pitichai (sp)  and a few others.  My B12 is normal, but Vitamin D is very low despite taking supplements.  Here are my results:

  

Granulocytes% BLD, QN           76.7 H

Lymphocytes%                                     16.3 L

Monos%                                     5.6

Eosinophils%                              0.9

Basophils%                                0.5

Granulocytes Count                   11.3 H

Lymphocytes Count                    2.4

Monocytes                                  0.8

 

Eosinophils                                 0.1

 

Basophils                                   0.1

 

Neutrophils segmented %BLD    77.0 H

 

Band% Manual Count              2

 

Lymphocytes % Manual              13

 

Platelet Estimate                        Normal

 

LDH                                         219    H

 

WBC                                         14.7 H

 

RBC                                           4.34

 

HGB                                         12.4

 

Hematocrit                                 37.2

 

Platelets                                   292

 

MPV                                           8.8

 

MCV                                         85.7

 

MCH                                         28.5

 

MCHC                                       33.3

 

RDW                                        14.8



#2 Sneezy12

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Posted 24 August 2012 - 07:08 PM

What do they plan to do next? Regards, Frank



#3 aamonsmom

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Posted 24 August 2012 - 07:30 PM

I'm still waiting for the BCR/AVL results and not sure what else.  I've been running an high WBC for years now and not one doctor could figure out why....no matter how many antibiotics they gave me.  They never seemed to do any further testing.  I happened to request a differential (Mom, Dad and Bro are docs) and finally had a Dr. who agreed to do the tests. Based on the results I posted, should I be concerned?  Also when they looked at my smear, they saw some Pelger-Huet anomaly, atypical lymphocytes, elevated granulocytes with mildly dysplastic changes.



#4 aamonsmom

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Posted 24 August 2012 - 07:44 PM

Oh also they are doing leukemia lymphoma phenotype and pcr quantitative as well.  How long does it take to get these results back if they sending them out?



#5 Happycat

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Posted 24 August 2012 - 07:54 PM

Well, if it is cml, and I'm not saying it is, then you will have some decisions to make. I think that's the real concern, isn't it?  What about the baby? 

You can't take TKIs while pg, which is the standard drug class used for cml. I'm sure there are women who have been dx'd with cml while pg. I can't say for sure, but it might be possible to do something like interferon until you give birth. Interferon is essentially like having the flu. (I think your body produces it when you've got the flu, and it's what makes you so miserable with the flu.). I do think I read that somewhere, that they can use interferon to try to keep the cml under control, then go on TKIs after giving birth. So you should be able to have the baby. Try googling taking interferon when pregnant.

So, if it is cml, you can likely take interferon, but you will probably feel super miserable on it. But the prize at the end of the pregnancy will make it all worthwhile.

How far along are you?

Traci



#6 aamonsmom

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Posted 24 August 2012 - 07:57 PM

I'm now 4 months so not quite halfway.  It was the OB/GYN who agreed to go further with the testing.  I was getting ready to cancel my health insurance when I found out I was pregnant.  It was a big surprise because I'm 42 and we weren't planning on having more children (we have girl and boy, 11&9),  It sure sounds like the Oncologist thinks there is something there but no real answers yet.



#7 Happycat

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Posted 24 August 2012 - 08:27 PM

My kids are the same age, 11, 9 and 9- twins and a singleton, all girls, and all 3 born in December, ay yi yi!

Your WBC and neutrophils are high, plus your LDH is high, which is indicative of high cell turnover. So it is reasonable to suspect cml, but I'm not sure of the other possible diagnoses they have to eliminate first.

It sounds like they are doing PCR to look for bcr-abl, and I think the phenotype means they will examine your chromosomes to look for the translocation between chromosomes 9 and 22, which is hallmark of cml.  It doesn't look like they are doing a FISH test from what you describe. If they send out the sample, it will take a few days to do the test. What will take time is Getting someone to write up the report and send it back. Be pushy and keep calling the doctors office. That way, they'll call you with the results right away, just to get you out of their hair!  Honestly, given the fact you are pg, I think they'd put a rush on it.

Traci



#8 aamonsmom

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Posted 24 August 2012 - 08:30 PM

Thanks so much for the information.  It's a little scary but strange because there's no history on either side of my family.  Its been 3 days since I took the follow up blood tests, so I am hoping to hear something soon.



#9 Happycat

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Posted 24 August 2012 - 08:38 PM

Most people don't have a family history of cml. it seems to be a big biological "oops" when it happens.

And you're right. It is pretty surreal at first.

Hopefully, all is well. Or if it isn't, they will have options to give you with the pregnancy. Do you have a maternal fetal medicine specialist for high risk pregnancy?  There must be some MFMs with an oncology specialty. I had one when pg with the twins. Actually, I had 3!  I was in the hospital flat on my back for 12 wks to keep the twins in there, so I got whatever MFM was on duty for the day.

Take care and let us know how it goes.

Traci



#10 aamonsmom

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Posted 24 August 2012 - 08:45 PM

I have to see a Perinatologist because of my age which automatically is considered high risk.  They actually put "Elderly Maternal Age" on my documentation...boy was I pissed. LOL.  If the diagnosis comes back as CML, I'm will to try whatever medications they state will be safe for the baby.  Reading a lot of these posts have made me feel a lot better.  I've actually suspected some sort of Leukemia for a few years and had done plenty of research but was hoping that I was worrying for no reason.  You tend to diagnose yourself when you come from a family of doctors. 

As soon as I get my results, I'll let everyone know.


Chris



#11 CallMeLucky

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Posted 24 August 2012 - 11:04 PM

I've read/heard that pregnancy can actually help keep the CML at bay.  That is not to say it wouldn't progress, but I believe it moves slower and it is already a slow moving malignancy.  People can often go a few years before being diagnosed.  I've also read that Interferon can be used during pregnancy.  Interferon was used to treat CML before TKI drugs were discovered.  For some people it cured them of CML, but it was a small percentage.  For others it kept it under control, but for most the side effects were too much to stay on it.  The important thing to determine is what stage you are in.  What I didn't see on your CBC was your blast count.  Assuming it is nice and low and you are still in early chronic phase, you may be able to ride out the pregnancy before beginning treatment.  The definitive way to diagnose CML (and any other blood cancer) is with a bone marrow biopsy.  PCR can tell you if you have BCR-ABL, which is the onco gene produced by Philadelphia Chromosome, which is the cause of CML, but it still leaves an incomplete picture without the Cytogenetics and bone marrow analysis.  If it does look like you have CML, then it would be to your benefit to see a CML expert.  I wouldn't want a run of the mill oncologist treating you when you are pregnant.  Where are you located?  Someone on the board may be able to recommend a good doctor in your area.

The good news is that if it is CML (ok that is the bad news) but if it is CML, that is better than pretty much any other type of leukemia.  The treatment for CML is very effective and not debilitating for most individuals.  Essentially you will take a pill for an indefinite amount of time.  If you respond like most people, the CML will be suppressed and not cause you any issues.  Unfortunately the TKI drugs cannot kill the CML stem cell so if you stop taking it the CML can come back.  As long as you take the drug you should be able to get along.  Side effects vary from person to person, most do pretty well with decent quality of life.

Hang in there, there is no good time to get a diagnosis like this, but during pregnancy has to be particularly tough.  Keep in mind that if it is CML, it is unlikely that CML will interfere with your normal life span.

Best of luck


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%
 

 


#12 aamonsmom

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Posted 24 August 2012 - 11:11 PM

Thanks for responding.  I'm in the Atlanta area.  I don't know if they did a blast count.  Maybe that is another one that they are waiting on.



#13 Trey

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Posted 25 August 2012 - 08:55 AM

Your current WBC at 14.7 is normal for a pregnant woman about halfway through pregnancy.  You say your WBC has been high for a couple years.  Normally the WBC would increase more than that during a couple years if it was CML.  See what the tests show, but it does not seem to be CML.  It sounds more like some other blood disorder, possibly inherited as shown by the Pelger-Huet anomaly (the Pelger-Huet anomaly is only found in CML if chemotherapy has been used, not generally in "normal" CML patients). 



#14 aamonsmom

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Posted 25 August 2012 - 09:14 AM

I agree that WBC will increase during pregnancy, as I stated it was high before pregnancy.  It hasn't been in normal range for quite some time.   I hope that its not CML and with your knowledge, I feel better just hearing that from you.  Thanks so much for responding.



#15 Happycat

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Posted 25 August 2012 - 11:43 AM

Chris,

I got tagged with "advanced maternal age" when I was pg with the twins at 35!  I remember remarking at the time that I wasn't aware I had one foot in the grave already.  Sometimes medical terminology is just stupidly offensive.  (Miscarriages were called "self-abortions" for years.  Not sure if they are still using the term.)

Traci






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