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Happy News!

Started by Melanie , Oct 07 2014 01:47 PM

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8 replies to this topic

#1 Melanie

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LocationArizona

Posted 07 October 2014 - 01:47 PM

Saw in another post about the turtle wins the race...I'm a turtle and I just took the lead! After 3.5 byears post dx, I've finally reached CCyR! Happy dance! PCR not bad either at 0.32. That PCR is from MDA, which doesn't use IS, but Dr Cortes translated to IS as being 0.1365.(???) I'm happy either way!

Thanks everyone for all the support, advice and knowledge I've gained from this site over this journey. That transplant the doctors kept tempting me with as my best option is now back on the bottom shelf where I pray it stays.

Did I say "Happy, Happy, Happy"...

Melanie

Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

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#2 Damerault

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Posted 07 October 2014 - 01:58 PM

Congratulations! You give hope to the rest of us. Be well and thank you for sharing.

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000

Be well, Diane.

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#3 hannibellemo

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LocationNorth Central Iowa

Posted 07 October 2014 - 03:52 PM

Great news, indeed! Congratulations!

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>

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#4 Trey

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LocationSan Antonio, Texas

Posted 07 October 2014 - 04:35 PM

Nice, also well on your way toward MMR based on MDA conversion.

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#5 Lucas

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Posted 07 October 2014 - 04:42 PM

Congrats!!!! So happy for you!

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#6 Marnie

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Posted 07 October 2014 - 05:22 PM

Yay!!!! Doing a happy dance for you right now.

Marnie

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#7 Susan61

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Posted 07 October 2014 - 05:28 PM

Congratulations!! Its progress from where you were, so just keep doing what your doing. I would leave the Transplant on the bottom shelf also. Not everyone responds the same way. Give it a chance to get even better.