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Possible CML dx?


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#21 Trey

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Posted 12 April 2015 - 12:46 PM

FISH might work but is only sensitive down to CCyR levels, and at her low numbers status FISH could be false negative.  Same problem with a BMB, which might or might not be accurate enough.  So if Steph wants to rule out CML to cross it off her concerns list (and I know she is worried about it from her several postings) she should use PCR.  Qualitative PCR is more sensitive than quantitative and a good yes/no test for CML.  I don't know about insurance paying, which might be an issue to address, since CML would not be suspected with her counts.



#22 StephMcIntyre

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Posted 12 April 2015 - 04:06 PM

Are those all blood tests? PCR, etc? I'm amazed that Gerry got diagnosed and treated without high white cells. So glad treatment seems to have worked. Very confusing diagnostic process. I definitely feel a cryptic feeling about my blood. Never heard of so many "high normals" without explanation. I just happen to be experiencing a subclinical allergy and infection at the same time?? My hematocrit being elevated is weird too. I don't supplement or eat tons of iron rich food. Thanks for the advice. I see that OP might be in the clear. I hope it stays that way.

#23 gerry

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Posted 12 April 2015 - 05:09 PM

Steph,

I'm not trying to worry you, and to be honest I was suprised with the diagnosis. I just decided that I wanted to find out what was happening on my cholesterol reports. :) I was diagnosed earlier than most due to my GP listening to me, If my genes hadn't decided to swap around it would have been an infection as the other GPs told me.

 

Word of warning if you're searching the internet looking for information on CML make sure you look at the lastest info. For most of us since the creation of the TKIs, the thinking is we will go on to live normal life spans.



#24 Trey

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Posted 12 April 2015 - 08:05 PM

PCR can be done on circulating blood.  Some can be diagnosed with CML earlier than others.  There is not a lot of useful data on when a BMB and FISH can diagnose CML, but BCR-ABL PCR (qualitative) would diagnose the earliest of any available test.  I would simply not want to see a false negative BMB or FISH for someone and have them go away thinking all is peachy.  A BMB would diagnose the widest possible number of bone marrow diseases, but it is done with marrow only, and the possibility of false negatives is higher than for a PCR (which only diagnoses one disease at a time).  There is no perfect answer, as with most things in life.  Just choices.

 

I would reiterate from previous postings that I doubt you have CML, but it is not impossible. 

http://community.lls...bc/#entry168650

 

Most people never know what is happening in their marrow, which is probably well for them.  The marrow is a wild ride with constant changes and dizzying production levels.  Within a few billion cells each day, how many are such and such is not what the marrow cares about.  It measures with a micrometer and cuts with a meat-axe.  If you run up the stairs it releases more white cells anticipating you will do something stupid and fall and bleed all over and need an immune response.  The marrow is not a precision instrument, and it thinks you are clumsy and stupid.  I would not relay on it for measuring a golf shot to the green in a tournament.  I rely on it to pump out billions of cells each day and hope it gets it close enough.  Birdie.  Next hole.


Edited by Trey, 12 April 2015 - 08:14 PM.


#25 StephMcIntyre

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Posted 13 April 2015 - 01:48 PM

Thank you everyone. I appreciate the information and don't really know what to do. It blows my mind that you could have CML and a normal white blood count. If you don't mind sharing, Gerry, was there a reason that they were willing to treat you with medication before your white counts reflected anything significantly abnormal? It seems rare to find a doctor that knows anything about basophils, let alone be willing to run those major tests and begin treatment. You are very lucky. It's awesome that you could go off the medications. Just for verification, is it outdated information that basophilia carries a poor prognosis? thank you!



#26 gerry

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Posted 13 April 2015 - 06:13 PM

Hi Steph,

Gleevec treats the CML which would have been identified from my BMB. i would not have been put on the TKI until the CML had been identified. :)

I'm Australian and our health system is supported by taxes, so perhaps easier to get tests done. But it still wouldn't have been ordered unless the hematologist I was referred to thought there might be something. 

 

I'm not sure how high your basophil level has to be in regard to a poor prognosis if you're diagnosed with CML, but it possibly also has to include high level of blasts..



#27 StephMcIntyre

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Posted 14 April 2015 - 11:48 AM

Thanks Gerry. Australia sounds pretty on top of things :) I'm so afraid to make a decision about this because I want to believe my current doctor. I feel scared that my platelets were also on the high side of normal. Is it rare for basophil elevation to arrive before the total wbc elevation? From what I've gathered, nobody knows the relationship b/w cml and basophils. That's why a diagnosis based on that alone seems very uncommon. My differential was done manually if that makes any difference. Is it more worrisome when 0.30 absolute basophils are seen manually instead of from the computer? Any chance of something else being mistaken for a basophil?

 

For Trey, were you saying that it's not necessarily an allergen that causes basophil increase? Just a hypersensitivity? I had eczema a couple years ago. could I have a subclinical reaction still going on w/o a rash? Can basophils be harmlessly high for no reason?



#28 snowbear

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Posted 14 April 2015 - 02:32 PM

If this only happened once and you don't have any persistent and/or worsening symptoms, I would write it off as fluke and not give it another thought.  Really.



#29 Trey

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Posted 14 April 2015 - 06:49 PM

For Trey, were you saying that it's not necessarily an allergen that causes basophil increase? Just a hypersensitivity? I had eczema a couple years ago. could I have a subclinical reaction still going on w/o a rash? Can basophils be harmlessly high for no reason?

 

It could simply be an autoimmune issue, which is what eczema is.  Both exzema and hives (uticaria) can elevate basophils.

http://www.diagnose-...phil-count.html

http://acaai.org/all...hives-urticaria

 

You may have several types of autoimmune issues.  My main point above was that the body responds to allergens in ways that are often not visible, such as runny nose, itchy eyes, and sneezing.  Sometimes the response is hidden until tests uncover them.

 

I would focus on this issue with an Allergist doc.  It would seem to be a more plausible explanation than leukemia in your case.



#30 jjg

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Posted 14 April 2015 - 06:56 PM

Hi Steph, My counts were almost identical to yours at diagnosis i.e. I was caught very early. BUT the first thing my doctor did was assume it was an infection and retest in 6 weeks (complete blood count), then when it was still the same she retested in 6 weeks, then when it was still the same she sent me to a hematologist who thought after 3 slightly abnormal tests I had a 50% chance of having CML. I was diagnosed with both FISH and PCR from a bone marrow biopsy. 


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#31 StephMcIntyre

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Posted 14 April 2015 - 08:26 PM

gosh i'm so nervous now. I didn't think there were so many folks here with relatively normal blood results. When I read that wbc is almost always above 50k, I stopped worrying before. But it def seems like basophils=cml,,,especially in a healthy feeling person. high normal platelets like mine also seem pretty characteristic of cml :( I feel sad that I had to seek info on the internet bc my docs don't have a clue



#32 Billie Murawski

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Posted 14 April 2015 - 08:52 PM

Hi Steph, I can't help you with any info about your dx, I just wanted to let you know I'm rooting for you. Hopefully everything will turn out okay. This board is amazing I have more faith in them than most doctors, I've even questioned my own onc on occasion.

                                          Good Luck   Billie



#33 jjg

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Posted 15 April 2015 - 12:56 AM

Steph, another way of looking at is is that very early CML doesn't look that different from healthy and there will always be some healthy people who occasionally have slightly abnormal tests. Even after 3 slightly abnormal tests my hematologist wasn't convinced I had CML. If I'd seen her after my first abnormal test I'm guessing she would have said to test in a month or two and been happy with doing so little for her consultation fee.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#34 StephMcIntyre

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Posted 15 April 2015 - 06:01 AM

thanks jjg... I know that another cbc would be in order to take the next step. my doc doesn't think it's necessary and I wanted so badly to not get another blood test. i hate worrying about this so so so much. I'm only in my early 30's and this disease seems so rare. I read 6,000 people a year? i'm happy that it's very manageable but i worry that my age might make it more serious. or the presence of so many basophils make it more serious. it sounds like basophils in heathy people should be at zero. and platelets should not be over 400k...i appreciate everyone taking the time. I also pray that everyone here is healing well. i've heard good things about cml treatment. 



#35 Gail's

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Posted 15 April 2015 - 11:33 PM

Keep us posted Steph. Channel a part of your worry into being an advocate to yourself, asking for tests to determine what's going on. It took about 18 months for my white count to hit a critical enough level that everyone had to sit up and take notice Good wishes to you.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




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