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#1 hannibellemo

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Posted 31 January 2018 - 06:40 PM

and good luck!


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>


#2 SUE

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Posted 31 January 2018 - 07:07 PM

What Pat said.


Dx  April 2013, FISH 62,  BMB not enough for PCR test; put on Gleevec 400;

 August 2013, FISH 8.7;

Oct 2013, FISH 5.6

Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;

Feb, 2014 PCR  6.8

May,2014  PCR   .149

Aug, 2014 PCR    .015

Nov. 2014 PCRU

March, 2016  went down to 40mg Sprycel

Oct. 2016   stopped Sprycel for a couple weeks due to concern about shortness of breath.  Echo showed mild PAH.

Nov 1 2016  resumed Sprycel 20 mg daily 

Dec 2016  PCRU

March 2017  PCR 0.020

May 2017     PCRU

Sept  2017   PCRU

Dec    2017  PCRU

 


#3 shweflen

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Posted 31 January 2018 - 08:00 PM

Thanks to all of you for the help and support over the past year.  I check this site before I look for e-mail or facebook every day.  I have not contributed much but have learned a lot and will miss the ease of communication we had here.  Thanks again.


10/20/2016 BCR-ABL:ABL = 81.622

01/11/2017 BCR-ABL:ABL =   8.028

04/12/2017 BCR-ABL:ABL =   0.157

07/07/2017 BCR-ABL:ABL =   0.000

10/04/2017 BCR-ABL:ABL =   0.041

11/28/2017 BCR-ABL:ABL =   0.000

 

 


#4 hannibellemo

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Posted 31 January 2018 - 08:46 PM

I just noticed your 0.000; congratulations, shwenflen!


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>


#5 kat73

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Posted 31 January 2018 - 09:54 PM

It's bedtime for bonzo here in Washington DC.  I can't believe when I wake up tomorrow this forum will be gone.  Bye.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#6 bufflehead

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Posted 31 January 2018 - 10:07 PM

Well, leave it to me to wait until the last moments...This is a thank you that is two years overdue. I have been following this site since just before LLS was about to pull it last time, shortly after my diagnosis. I have to thank everybody who worked so hard to save this discussion board back then. It's been immensely helpful, supportive, and sometimes even entertaining. Even though I never participated, I always felt like I had an understanding family in these pages.

The Community site looks pretty awful by comparison, but I hope in time it will be more like this site. I will miss the wealth of information here, and how easy it was to search for such fun topics as nausea, hair loss, pleural effusion, and brain fog.

Best of luck to everyone, and hope to continue to see your comforting presence on the other site.



#7 Buzzm1

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Posted 31 January 2018 - 10:22 PM

Well, leave it to me to wait until the last moments...This is a thank you that is two years overdue. I have been following this site since just before LLS was about to pull it last time, shortly after my diagnosis. I have to thank everybody who worked so hard to save this discussion board back then. It's been immensely helpful, supportive, and sometimes even entertaining. Even though I never participated, I always felt like I had an understanding family in these pages.

The Community site looks pretty awful by comparison, but I hope in time it will be more like this site. I will miss the wealth of information here, and how easy it was to search for such fun topics as nausea, hair loss, pleural effusion, and brain fog.

Best of luck to everyone, and hope to continue to see your comforting presence on the other site.

Don't be a stranger Bufflehead; please let us know about your CML history the next time you post ... thanks in advance ...


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#8 Melanie

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Posted 31 January 2018 - 10:52 PM

Also wanted to say thanks to everyone for all the same reasons already mentioned so well by everyone else. I will miss this forum and all the people who have given support, wisdom, and companionship. Wishing the best to everyone in their continued journey with CML and praying the new sites will bring us all together again in time. Take Care all!
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)

#9 Red Cross Kirk

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Posted 31 January 2018 - 11:53 PM

Good night.

 

Trey, would you mind turning off the lights on your way out? Thanks.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%





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