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6 Mo. BMB, PCR, and FISH coming up.....

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#1 JoshLee



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Posted 15 July 2011 - 10:51 AM

Hey All,

      I have my 6 month check up/evaluation on Monday and I am pretty anxious for it already. Not really even nervous for the BMB, just the results that come afterwards. I have a full weekend a head of me with friends and some get togethers, so that should help. I tend to get really emotional and anxious around these times. Almost like after they are done, I feel like I have 3 more months not to worry about CML or after a bi weekly CBC I have a few weeks to not worry about it. I guess whenever I have these PCR and FISH tests, it reminds me of what I am really dealing with. Any words of support, encouragement, rational thoughts, would be greatly appreciated. Have a great weekend, everyone!

#2 CallMeLucky


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Posted 15 July 2011 - 11:10 AM

All I can say is that I know exactly what you are talking about.  When you get good test results it is like a new lease on life for the next three months, you feel good and your mind gets away from CML for a little bit.  As the date draws near for a another appt you start thinking about it again and it weighs on you.  Then the waiting for the results is obviously stressful.  I don't know of too many ways around it.  What you are feeling is typical and what many of us describe.  I wish I had a way for you to feel better about it, but I don't know how to do that myself.  I think you are doing what you should be doing, keeping busy with things that distract you and just living your life, that is the only thing you really can do - that and make sure you are taking all your meds on time.

Hang in there, the appt will come and go soon enough and you will have your results which will most likely be good.  Try to get used to it, there's a good chance you're going to be doing this for many years to come.

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%


#3 Taylor



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Posted 15 July 2011 - 11:17 AM


I'm right there with you buddy.  I'll do my 6 mo. FISH and PCR in August after having been on Tasigna for 6 months by then.  I know the feeling; I'm that way with my bloodwork too.  It seems like I don't worry now until the day of and then I'm anxious to hear the results the next day, only to know if I get to live another month or not--which I know sounds morbid, but in a way it's true.  I'm like that when I go to the onc as well and I'm sure I'll be that way for the PCR and FISH results.

Best of luck with everything.  I feel pretty good about Tasigna doing well, especially after seeing grannyd's 6 mo. results.  I hope the same goes for you.  Have a good full weekend and enjoy it!

#4 grannyd


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Posted 15 July 2011 - 12:49 PM

Josh, I feel the exact same way!!! But I start the day before with anxiety, my husband knows when it is time for blood work and always says he needs my help in the garage or some project he is into!! He is so understanding. I was shocked with my results of CMR----didn't expect that for months yet!!! I pray I can hold onto CMR!!! Hope you get the same results!!. Tasigna has been good for me, no side effects. I talked with my Dr. about timing of it. I'm up at 5:30, have a pot of coffee, take T at 8:00am then take my evening dose of T between 10-11pm. She said that is fine. Think positive and know you have all of us sending prayers your way. Be sure to let us know about your results-----we all care about you!!!

Taylor, the same goes for you too!!!!!!! Prayers to all, granny d

#5 nathaliece


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Posted 16 July 2011 - 08:18 AM


I completely understand your anxiety.  I was dx in 11/10 and have felt the same way for each PCR, despite making great progress.  I guess part of learning we have this disease, is we appreciate that we should not take anything for granted.  I try (not always successful) to make the most of each day and commit to not let my worrying overtake me.  I have an 8 year old son and he deserves the best mom possible so that is my inspiration.  Also, despite my worrying and sleepless nights (never sleep the night before my appt to learn PCR results), I have received favorable news.  So what good was all the worrying?  It is so hard though!  This board has been invaluable to help me learn about the disease and drug therapy options and be surrounded (in a cyber way) by wonderful, caring folks who understand more than anyone else about this journey.

Enjoy your weekend.  I'm pulling for you!


#6 hannibellemo


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Posted 16 July 2011 - 11:03 AM


Totally understand where you are coming from. Trust us, it does get better. I remember the first time I was told I didn't have to come back for a CBC for 3 weeks (never mind the big tests)! The first week was fine - I resorted to mind altering drugs to get me through the next two weeks cause I was positive that my WBCs were shooting through the roof! Ok, not really mind altering, but the Xanax came in very handy!

Glad you have a busy weekend planned with friends and fun times. Keep your mind busy and off worrying. I'm a firm believer in, "where your mind goes, your energy flows," I just haven't figured out how to put it into action!

Have fun!




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#7 JoshLee



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Posted 16 July 2011 - 11:24 AM

Thanks for all the support. Yesterday I was freaking out because I was convinced that my WBC was high and that I had a fever.....I asked my onc. for a CBC...Got one......And I actually got the best numbers I've had yet. Hb was 14.7 WBC was 4.8...PLT Up to 128. Will I ever get less paranoid? Will I ever stop predicting??? NOOOOOOOOOOOOO! lol. Thanks again for all the support. It means so much to me to hear that I am not the only anxious person on this board! 

#8 sdl722


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Posted 16 July 2011 - 12:34 PM

Hey Josh -- I totally know the feeling.  Had the same thing happen to me last week before I got labs done to check my liver functions.  I was convinced my WBC had gone up and was all paranoid before going to get checked.  I was overanalyzing how I felt, how much color was in my cheeks, how my appetite was, etc.  At the cancer center my blood pressure was through the roof, but in the end everything was fine.  And even better than my last results.  I go back in 2 weeks for 3 month BMA and Fish/PCR test so I know I will probably get nervous again.  I guess it is something we all go through.  I try telling myself that I was a lot sicker and in a worse situation pre-diagnosis (WBC at 450K) than I am now, even if I did think my counts were starting to creep back up.  I also try to remember that I have professionals that will be there to take care of whatever curveballs CML throws my way.  Of course, thinking like this still doesn't calm me down!

Good luck on Monday.


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