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Someday I am going to the doctor and it will be uneventful (today was not that day)


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#1 CallMeLucky

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Posted 10 June 2011 - 02:45 PM

A few days ago I noticed I had a swollen lymph node in the beck of my neck.  I've noticed this particular one for many years so I know it is not an issue but it was hurting when I touched it which was different and that's when I found another enlarged node below it.  I was feeling fine so I didn't know why this was happening.  I was trying not to let my imagination get the bet of me, figuring the odds or getting lymphoma and CML together should be pretty rare.  I figured I was going for my BMB next week and my onc would check it out and be able to tell me if it was anything to worry about.  I woke up this morning with a wicked sore throat.  In one sense this made me happy because now the swollen lymph nodes had some justification, but I was worried if I might have gotten strep and I'm supposed to go for my BMB on Monday.  Walking into a cancer center with strep is beyond irresponsible, so I called my PCP and talked them into seeing me right away.

She came into the office and checked me out, note this is the doctor who first caught my CML during my physical last year.  She ran a strep test which came back negative, she checked the lymph nodes and said she didn't think there was anything to worry about with them.  She then proceeded to examine me and feel around my neck and the conversation went like this

Dr: "Hmm"

Me: "Hmm? What's hmm? There shouldn't be a hmm"

Dr: "Your thyroid is enlarged"

Me: "Are you kidding me?  What does that mean?  You can't do this to me again?"

Dr: "It's probably nothing, but just to be safe, let's get an ultrasound"

So I begged them to get me the ultrasound today, they squeezed me in somewhere and I ran over to radiologist.  The whole time telling myself "it's just not possible that exactly one year later the same doctor is going to diagnosis me with another form of cancer, that' just not going to happen."  A couple of hours later they did the ultrasound.  Normally the results take a couple of days but I explained my situation and they were very understanding.  The tech told me she wasn't supposed to tell me anything, but the scan was fine.  She then went and got a radiologist to look at it and he also said it was fine.

So at the end of the day, I'm back home, I still have a sore throat, I ran up another $500+ in medical bills, and I'm relieved to still ONLY have leukemia.  Now I can stop worrying about that and go back to worrying what I should be worrying about, my 1yr BMB on Monday.

My first Onc was right, who's luckier than me? lol


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%
 

 


#2 Susan61

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Posted 10 June 2011 - 03:34 PM

Hi Lucky:  I know exactly how you felt as you underwent testing for something that could have been another cancer.  I developed a huge lump on the front of my clavicle back in Oct.  It just popped up, and I had such terrible pain that I could not move my  head.  I went for a series of tests, and was told it was a double calcium deposit.  Two deposits formed right next to each other.  My primary was not concerned, and then when I saw my Oncologist she said OUCH!!!

They really hurt.  They both said that if it continues to bother me that I could get it removed by them going in and basically scraping it off the bone.

I do not have the pain that I had, but the big lump is still there 8 months later.

     I have a Parathyroid Problem also which causes a high calcium level in the blood tests, so now I want to get some more testing to put my mind at ease.

    Its so normal for us to panic when something new pops up to throw everything off.  I am sure the swelling will go down if it has not done so already.

I am sure it was the sore throat brewing that caused that for you.

   Hope your feeling better.  Have a nice weekend.  The things we do to ourselves when our minds go haywire is unbelievable.

Susan



#3 Trey

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Posted 10 June 2011 - 04:19 PM

TKIs can affect the thyroid.  Did they do a thyroid enzyme test?



#4 CallMeLucky

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Posted 10 June 2011 - 04:33 PM

Trey - I mentioned to her that I thought TKI could affect Thyroid and she said she would check my "Thyroid Function".  Hopefully that is the same test youa re talking about.

I had read that Gleevec could effect Thyroid and that could be a possible link to the fatigue ( I think you might have written that) but could it cause it to be enlarged?  At this point I'm not sure if it is enlarged or if it is just larger to begin with.  According to the ultra sound it is "normal".

I will hear back on the blood early next week.

Thanks


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%
 

 


#5 Trey

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Posted 10 June 2011 - 04:47 PM

The thyroid is hard to diagnose as "enlarged" by feeling for it without making the patient feel like he is choking.  I would say she was probably mistaken given the ultrasound result.  But the Thyroid Function Test is a good idea for anyone with CML.  If you have trouble swallowing, then the thyroid could be somewhat enlarged.  Gleevec has caused me to have tightness in the throat, and low-normal thyroid function results.

http://thyroid.about...e/a/10signs.htm

http://thyroid.about...yroid-check.htm



#6 Susan61

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Posted 10 June 2011 - 05:45 PM

They run Thyroid tests on me all the time, and I had 2 Parathyroid Scans done that were negative.  I have had a normal high calcium level, and low phosphorus level since the 80's, and none of my doctors every did a Parathyroid Test on me.  My kidney functions came back abnormal  a few times, and I was sent to a kidney specialist, and he was the one who ordered my Parathyroid Scans.  He then decided after all the testing that it was secondary to kidneys, and diagnoed me as CKD.  This was 4 years ago.  In the meantime my kidney functions have all been normal on all my test results with the exception of a GFR rate of 54 and 60 is normal.  This is how I am running constantly.

The doctor feels that I am constantly dehydrated also, and I know he is right with that.  I never drink enough fluids, especially my water.

I stopped seeing the kidney doctor, because he kept saying your fine see you in 6 months.  I felt that I can see my own blood work and keep an eye on the kidney numbers which my Oncologist and Primary  have been satisfied with.  If I or they see any big changes,then I figured I would follow-up again.

My primary does want me to do a PTH with my August blood work to see if there is anything going on.  At that point I will see a Endocrinologist who my  husband has been seeing for quite awhile now.

I am very frustrated with everything along with still being monitored for the blood clot in my leg.



#7 cometbro

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Posted 10 June 2011 - 07:37 PM

Hey Lucky, its good to hear that its not something more serious.  I've also been having these thoughts that i've possibly developed yet another form of cancer every time something doesn't feel right with some part of my body.  Man, that was a scary exchange you had with your doctor.  That kind of seems to be the story these days...you go to the doctor, they need to do further tests, you get scared, it turns out to be nothing major.  It still sucks we have to go through this but hey, we're alive.



#8 Skittles

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Posted 11 June 2011 - 07:09 AM

Lucky, first let me say how glad I am that your ultrasound was ok and that I'm wishing you great results on your BMB Monday.  I am in the waiting process of PCR results so I know it a little antsy at times with CML.  Now, I am also on Gleevec and have hypothyroid (underactive thyroid) and the test that needs to be done is a blood test.  It's a thyroid panel including a TSH.  That will determine if your thyroid is doing what it should be doing.  Gleevec can make a thyroid underactive.  I do not know if it can make it overactive or not but I have my thyroid TSH checked twice a year and I take thyroid hormone medication to treat the underactivity of my thyroid.  Hope this helps.

  Very Best wishes for Monday!  Skittles



#9 Tedsey

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Posted 11 June 2011 - 05:35 PM

I read this the other day and wanted to say that I am very glad all is OK.  Who needs more of this crap?  Eh?  Glad you didn't get another dose.

Teds



#10 PhilB

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Posted 13 June 2011 - 04:14 PM

Hi Lucky,

I know exactly how you must have been feeling and I'm really glad it looks to be something of a false alarm.  I've been off the boards for a while as I'm trying not to think about probably having a second cancer.  Plenty of distraction therapy - exercise, gardening, playing with the kids, drinking myself insensible most nights.  The usual.

I hope the throat improves, and most of all I hope the BMB brings good news - and as Trey says, maybe they'll even suck out that highest level Leukaemic stem cell with the needle!

Phil



#11 CallMeLucky

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Posted 13 June 2011 - 04:37 PM

Hey Phil good to hear from you.  Makes sense on the staying away sometimes.  I can appreciate the detox effect.  Sometimes I wonder if I think about it too much!


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 CallMeLucky

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Posted 13 June 2011 - 04:41 PM

Thanks everyone for the comments, I appreciate it.

Today I'm happy to say was an uneventful day.  I went for my 12 mo check up today, planned BMB.  Dr walked in with my CBC, all counts rock solid in the normal range, she said with a CBC like that and the fact my last PCR was 3 log reduction, there was no reason to do the BMB.  At this point I have acheived all the milestones she wanted me to and now it is just a matter of getting back on with life and in the back of my mind hoping the CML stays under control.  I asked her when I would be out of the woods, she said on my 80th birthday.  Point taken, but I am very happy with where I am today.  PB FISH and PCR results should be back in a week or two and hopefully they will be as expected.

Thanks again to all and hope everyone is feeling well today....


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 GerryL

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Posted 13 June 2011 - 07:44 PM

Hi Phil,

Been wondering where you were, praying you get good news.

Gerry



#14 grannyd

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Posted 13 June 2011 - 07:49 PM

Great news Lucky!!! Very happy for you!!!! I am coming up on 6 months in July, have an appointment on the 7th. I get sooooo stressed out just getting monthly CBC, so already getting stressed for the 7th!! Many continued good reports to you & all on this board! Prayers to all, granny d



#15 janner25

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Posted 13 June 2011 - 08:16 PM

Hey Lucky - glad to hear it was nothing!  PHEW!  Living with CML is like waiting for the other shoe to drop - everyday.  Although not worrying about it everyday - like at first diagnosis - and right before appointments .

Also super glad you didn't have to go through a BMB...I pray I'll never need one again!  Praying that the PCR stuff comes back as we all hope it does!

Keep us posted!

Janner



#16 Susan61

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Posted 13 June 2011 - 10:34 PM

Things Look Good To Me as far as your visit and testing.  The things we do to ourselves.  I get my PCR test done in July for my 6 month check.

I still get edgy everytime I have to go for anything. Seems like we all go through these mixed emotions with all the tests etc.  Its great the way we all support each other to get through whatever it is.



#17 acb

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Posted 14 June 2011 - 11:40 PM

Hey Lucky,

I am late to this (totally off topic, but I have been away at Disney World with the family and survived ... had fun too and the least amount of fatigue I've had in months -- strange but true). Anyway, I went to urgent care in early May (on Derby Day, May 7th to be exact -- I tell you this because I got the "bottom of the barrel" rookie for a doctor as a result) with a sore throat, swollen lymph nodes, and a pain in my side similar to spleen pain I had at diagnosis. Anyway, they did a rapid strep test and a CBC. Strep was negative and CBC normal, so they sent me on my way. My side pain lasted for a good week and then went away. Fast forward to Saturday morning of Memorial Day weekend -- off to urgent care again with sore throat, swollen lymph nodes, and tiredness (why do these things always happen to me on holiday weekends??). Rapid strep comes back negative -- I push the doctor, telling her both my kids had strep this week and are on antibiotics (which was true). So she orders the 24 hour culture. They call me Tuesday morning (after me attending 2 kid's birthday parties and an extended family gathering) to tell me I had strep!!

So, the point of my long-winded story is to say that if you still have symptoms that pop back up, you might consider having them do a culture for strep rather than just the rapid test.

Glad to hear you dodged the BMB and hope your other tests come back great!



#18 CallMeLucky

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Posted 15 June 2011 - 07:24 AM

Thanks for the advice.  They actually did the full culture in addition to the rapid test and I have since heard that was negative too.  It's funny what you bring up about the urgent care and the less qualified doctors.  A few months back I was having issues with dizziness.  I called my PCP and the receptionist gave me the typical "your doctor doesn't have any openings but you can come in and see the PA".  PA's are usually just prescription writers but against my better judgement I went in to see the PA.  He waived a pen in front of my face and it made me dizzy and he said I had vertigo and wrote me a prescription.  Needless to say my dizziness did not go away and I went to see an ENT specialist.  I told him about my visit with the PA and he just shook his head.  He said "yeah, if I shake you violently, I could also make you dizzy, you don't have vertigo".  At that point I decided I would no longer go against my better judgement and would not see a PA again.  Fast forward to last week, I call the office with the sore throat and I get the same line about coming in to see the PA.  So I said to the receptionist "look, I don't want be a pain in the ass, but I have leukemia, and I can't afford to be mis-diagnosed, I need to see a doctor, not a PA".  She didn't seem phased by what I said so I just told her to have the doctor call me back as soon as she could.  A short while later I got a call from the receptionist who told me to come in as soon as I could and my doctor would see me.  When I saw the doctor, I apologized for being pushy and just told her the same thing about not taking a chance on getting the wrong diagnosis.  She told me I didn't have to apologize and she understood and that anytime I have a problem to call her and they will fit me in.  Even though I know I screwed up her schedule that day, she spent a good amount of time with me, gave me a full exam and talked through a few different things with me.  I always felt she was a good doctor and the way she handled this recent event makes me really glad I chose her.  The icing on the cake was Monday evening when I got a call from her asking how my visit went that day with my oncologist.  I kept waiting for her to tell me something pertaining to my visit with her, and then I realized she was just calling to see how I was doing.  I thought that was pretty cool, many doctors don't do that.


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%
 

 





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