Me again. I am very happy to report that today I received another PCR 0.000 🤗 Results are unchanged for 7 years + 2 months; now LIVING 5 years + 2 months TFR!
Have been testing twice a year for three years (previously, more frequently), and now my onc is checking with the Stanford specialist who approved my one-person TFR trial in Sept. 2011 whether going to a once a year testing would be okay. She will let me know next week whether I will see her again in six months or in one year.
Hooray for all the doctors, researchers, nurses, and online groups who have guided me so very far! Thank you, thank you. Have a glass of wine, or if you live here in California, enjoy your new options 🍪!
I've been heartened to read of the continuing interest and approaches and studies in the field of CML treatment, including TFR possibilities for those so inclined and supported by their oncs. May everyone participating in furthering the knowledge rejoice.
And to those living with and challenged by the day-to-day reality of CML, you are so strong and caring, only you know what it takes to make it through each day: congratulations!
Wishing you all the very best of health and wholeness. And, Happy Thanksgiving!
ChrisC
TFR report, update
Started by
ChrisC
, Nov 10 2016 09:46 PM
15 replies to this topic
#1
ChrisC
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Posted 10 November 2016 - 09:46 PM
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!
#2
Frogiegirl
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Posted 10 November 2016 - 10:08 PM
Wow, just wow. I'm speechless. Congratulations!
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#3
tiredblood
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Posted 10 November 2016 - 10:11 PM
So encouraging ChrisC. That's wonderful! I can't help but believe that each of our experiences with CML and TKIs and varied responses to treatment will help others for years to come. Go team CML!
#4
Melanie
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Posted 11 November 2016 - 12:34 AM
Congratulations ChrisC and how uplifting and encouraging your story is! Wishing you the best and Happy Thanksgiving to you too!
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)
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)
#5
SUE
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Posted 11 November 2016 - 02:36 AM
Congratulations, Chris! Wonderful news!
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
#6
nsharavana
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Posted 11 November 2016 - 04:14 AM
congrats chris..god bless you..
considering the fact that you had a quick PCRU after the shift from glivec to sprycel, can you kindly share with us details regarding your RQ PCR values from diagnosis till the time you hit PCRU ????
we will all be enlightened, perhaps on the potency of sprycel..best wishes
#7
Cathy
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Posted 11 November 2016 - 08:23 AM
Wow Congratulations Chris! That's so wonderful!
Enjoy TFR !
Cathy
Cathy
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
#8
VickiW
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Posted 11 November 2016 - 10:37 AM
Fantastic news Chris!
(Hi, remember me???)
You give all of us following in your footsteps reason to hope, "me too"!
BTW-just hit my own 6 month TFR PCRU mark so first big hurdle cleared, here I go!
Here's hoping we both remain in the winner's circle for many years to come 
Vicki
Dxd 2007
started on Gleevec switched to Sprycel 100mg in 2009
PCRU since 2011
20mg Sprycel every other day since Dec. 2014
Began TFR 4-18-16
#9
ChrisC
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Posted 11 November 2016 - 12:41 PM
Hi tiredblood, Melanie, SUE, and Cathy: Thank you so much. May your healthy dreams come true soon as well!
Hi Vicki: Hi you! Congratulations on your well-begun TFR journey 
) Wow, back when we all first met on this board we had little insight into what was to come. Yay to all of us!
Hi Frogiegirl: Wow yourself! Here's wishing for you that your precious invitation to a special soul to join your family " you are sending out the best wish that there is " and may you receive the best answer possible. Carry on in good health!
Hi nsharavana: Here are the numbers from an old file I kept. For the first seven months of treatment I tried to stay on Gleevec, but due to side effects my onc and I tried reducing from 400mg first to 300mg, then 200mg, then I was told by a CML specialist at Stanford that he referred me to, to take an up-to-4 weeks' TKI vacation and then restart Gleevec at 400mg again, to see if we could reset my system's acceptance to Gleevec. Decided to switch to Sprycel at the end of the Gleevec vacation.
In the big picture, there is no easy explanation for what happened to me, other than perhaps what I just found in another file, where I wrote to myself (Aug. 11, 2011, a month before stopping Sprycel) proposing a deal that if the inherent intelligence in my body would awake again to correctly handle the mistaken mission of the CML stem cells, that I would then stop the TKIs when possible (ended up happening a month later), so as to avoid doing more damage to the proper functioning of my body:
“Listen up, body! Now that enough time has passed that the few remaining CML stem cells are getting zapped by the TKI as they divide, and the original CML stem cells that are hibernating aren't getting detected by the PCR tests, I'd like to ask all the intelligence functioning in my body to work together and eliminate these remaining CML stem cells. There are so many ways that the body repairs itself!
“Here's the deal: Body, if you (and my onc) agree, I will stop feeding in the TKI and disrupting the intelligent functioning of my body (as witnessed by all the debilitating side effects created by the TKI) in exchange for the above-mentioned group effort to eliminate the original CML stem cells.
“Fixing this CML-disorder requires everything functioning properly, and I wish to assist in this by having a clear intention and vision of restored balance and perfect health.”
• 10.23.08 21.225 baseline at dx
10.28.08 Gleevec 400 mg [. . . 300 mg . . . 200 mg / several short vacations over the months due to side effects]
12.1.08 5.093 0.091 log reduction
2.2.09 0.325 1.104 log reduction
3.2.09 0.229 1.256 log reduction
4.1.09 0.440 0.973 log reduction
• Gleevec vacation 4.21.09 to 5.18.09 [approved by Dr. M and Dr. L]
• 5.18.09 ' 3.986 0.015 log reduction
• restart Gleevec 400 mg for 1 week, while Sprycel was ordered
• Stopped Gleevec on 5.25.09 before starting Sprycel 5.27.09
WBC: ' 13.52 on 5.18.09, from 7.18 on 4.1.09
5.27.09 • Began Sprycel 100 mg
[tummy trouble 1x during 1st night; no headaches, etc., after starting!; day 3 I felt “I'm back!” " no more Gleevec toxic blah]
6.9.09 1.358 0.483 log reduction WBC: 4.76
8.10.09 0.007 2.71 log reduction
• 9.14.09 0.000 over 5 log reduction
There has never been any detectable change from 0.000. All my PCR tests are processed by Quest Labs.
All the best to everyone,
ChrisC
Edited by ChrisC, 11 November 2016 - 01:34 PM.
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!
#10
gerry
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Posted 11 November 2016 - 05:03 PM
Congratulations Chris,
It was Joel and yourself that helped me to decide to try cessation. I have been 3 years TFR and also continue to be PCRU. I don't believe we are cured, but I remain hopeful that the body will continue to know what it should be doing.
It was Joel and yourself that helped me to decide to try cessation. I have been 3 years TFR and also continue to be PCRU. I don't believe we are cured, but I remain hopeful that the body will continue to know what it should be doing.
#11
hannibellemo
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Posted 11 November 2016 - 06:05 PM
Chris,
I'm so happy for you! Hard to believe it has been 5+ years, it just seems like yesterday when we collectively gasped at your courage! 
Here's to many more years of treatment free living!
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>
#12
ChrisC
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Posted 11 November 2016 - 08:33 PM
Thank you so much, Pat!
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!
#13
Frogiegirl
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Posted 12 November 2016 - 04:24 PM
Fyi Chris I put your saying as a screen saver on my phone. ...and I say it daily. Sometimes a few times a day. .....it's beautiful.
Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.
Nov 8th 2017 went off Tasigna
Dec 1st PCRU off TKI
Jan 5th PCR Detected .0625
Feb 1st PCR Detected .7815
Added 8-6 grams Curcumin daily in Feb
March 3rd PCR Detected 3.2646 YIKES!
stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)
FYI I'm not done trying for my last little one.
#14
ChrisC
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Posted 12 November 2016 - 07:49 PM
Fingers crossed, Frogiegirl
BTW, the technique is to be silent, gently think your desire, then let it go.
Best of success to you!
ChrisC
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!
#15
ChrisC
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Posted 13 November 2016 - 03:37 AM
Hi Gerry,
I missed thanking you, and indeed I want to congratulate YOU in your continuing successful TFR journey " 3 years already! " and to wish you many, many more. You are also to be applauded for your generous and continuing support for others as they question about, approach, and some even begin, trials in TFR, well done!
ChrisC
I missed thanking you, and indeed I want to congratulate YOU in your continuing successful TFR journey " 3 years already! " and to wish you many, many more. You are also to be applauded for your generous and continuing support for others as they question about, approach, and some even begin, trials in TFR, well done!
ChrisC
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!
#16
nsharavana
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Posted 15 November 2016 - 01:27 AM
many congratulations chris..thanks for your motivating story..god bless
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