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Tomorrow--6 month follow-up


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#1 Taylor

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Posted 08 August 2011 - 10:32 AM

Hi all,

Tomorrow is my six-month follow-up with the oncologist.  I was diagnosed on January 31st--in fact, I didn't even realize my half-year cancerversary had come and gone at the end fo July.  Today however is six months from being released from the hospital and beginning Tasigna.

Anyway, it's a big appointment.  We will be taking PCR and FISH for the first time since dx.  I reached CHR in a month on Tasigna, and I'm hoping my FISH and PCR follow that at this time.  It will be a bit nerve wracking waiting for the results but I guess if I've made it this far.  There have been bumps in the road--the usual side effects, extreme and sudden anxiety that I'm finally getting rid of, and moving on with things--but so far, so good.

Just thought I'd share.  Each good CBC and onc appointment give me more hope, so I'm ready to know how the marrow is responding and get even more hope.

Taylor

P.S.  The Tasigna instructions ask for EKGs to vaguely be done "periodically during treatment".  Any idea what this means or should be?  I had all the other EKGs done as laid out and then two extra in March and June (for anxiety-related ER visits, which I didn't know that's what it was at the time) and they were both fine.  Not worried about the long QT anymore, but still curious as to if I should expect more EKGs.



#2 CallMeLucky

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Posted 08 August 2011 - 11:42 AM

Best of luck on your appointment.  Tasigna is good stuff and I would expect you to see some good results.  Try not to let your nerves get the best of you.  Please let us know how you do.....


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 grannyd

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Posted 08 August 2011 - 12:26 PM

Taylor, best of luck tomorrow!!!! I also take tasigna & reached CMR(yesssss) in 6 months so I am praying for you to do the same!!!! I pray I can hold CMR for the long run!!! The anxiety before an appointment is THE WORST!!!!!!!! We all go thru it, so try to stay calm & know we are all thinking of you!!!! Keep us updated!!!! granny d



#4 Susan61

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Posted 08 August 2011 - 02:10 PM

Hi: Wishing you the best on your appointment tomorrow.   We all get that anxious feeling everytime we have to get checked, no matter how long its been or how many times we get our test.  What your feeling is so normal. Sounds to me like your doing very good, and should get some good results also.

Let us know as soon as you know.

Susan



#5 hannibellemo

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Posted 08 August 2011 - 09:47 PM

You have such a good attitude, Taylor! Good luck tomorrow. I've made a few anxiety related blood draw runs myself.

Pat


Pat

 

"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>


#6 ChrisC

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Posted 09 August 2011 - 03:27 PM

Now that you've had your appointment (and we hope it went very well), Taylor, you have our encouragement to take it easy while waiting for all the test results. The day you get those is when you celebrate and share with us the good news!


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 





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