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#1 cleocans

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Posted 16 October 2013 - 11:24 AM

First I'll start off by saying I met my new oncologist today.  He was nice and very helpful and seemed to be up on all things CML.

I am not undetectable like I thought.  When I had my lab work done in April it was on Fish instead of PCR.  I have no idea why my old onc did a FISH instead of PCR.  So while Fish was undetectable or zero I have no idea what my PCR was.   I found out my July PCR results though.  0.15% so basically they have not moved since July of last year. (0.151%)

Last October I was told undetectable but since no records can be found of it I don't know if that was a Fish or not.  January 2013 it was 0.005 but again no records could be found.  So yeah I am a little frustrated.

My new onc wasn't concerned and said to wait and see what todays test brings.  At least he will call and tell me, unlike my last onc who would only call if she was worried.

My CBC looked good except for some low WBC's (3.4) and low ANC (1.59)



#2 Susan61

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Posted 16 October 2013 - 12:11 PM

Hi:  Do not get frustrated.  You did the right thing getting a new Oncologist for one, and now let him run the PCR test so you can see exactly where you are.  My WBC has been running around 3.4 for over 10 years.

I never get a call from my Oncologist, which is one of my complaints.  I guess because it pretty much runs the same every 3 months.  I call her office, and have the girl fax me a copy so I can see everything myself.  I do see her at my 6 month check which is when I have a PCR done.  I just ask her if the PCR is still 0.000 undetectable, and then I just let her say what she has to say.

Susan



#3 mdszj

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Posted 16 October 2013 - 04:02 PM

One possible thing, which I am sure you have likely checked into already, but on the off-chance it may be of help to you: I use Quest lab (because of my insurance).  But they let you fill out a form to request all your test results, so you do not have to depend on the doc to send them to you.


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16


#4 cleocans

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Posted 16 October 2013 - 04:20 PM

Mdszj, that is another one of my frustrations.  I started with Clarient, then in I had one done at Quest.  My insurance requested they go back to Clarient.  But July results are from Genpath.  Three different labs in 2 years!  My new onc wants me to have copies of all my results so that is not a problem!



#5 cleocans

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Posted 17 October 2013 - 09:55 PM

Susan thanks for the reply.  I did not change oncs.  She was commuting from Oklahoma City, at least 90 minutes away.  It was getting too much for her with two little ones at home.  I thought she was a good onc but I see differently now as my new onc pointed some things out to me at my appt.

I was wondering why lately I am always feeling like I was coming down with something but never really get anything.  It is my low ANC.  I'm tired of being tired all the time!  We are putting our house on the market tomorrow but won't be showing it till next week because I can't seem to get everything done by myself.  My husband is in Denver.  He's been there since June.  He was looking for a job and finally found one two weeks ago. It's been a pretty crazy and stressful summer.






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