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six month cessation result ...


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#1 scuba

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Posted 17 August 2015 - 08:38 PM

I just received my six month PCR result since stopping Sprycel (20 mg.).

 

PCR < 0.05% (M.D. Anderson Scale ~ 0.02% I.S. scale).

 

So I had a slight increase from last month within the margin of error and below MMR. The recommendation is for me to continue as planned - no TKI for another month. If my level drops back down next month, I begin testing every two months and I will have crossed a hurdle.

 

As long as I am below 0.1% (I.S. scale) which is MMR, I get to stay off Sprycel.

 

And so it goes ... 

 

 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#2 DebDoodah22

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Posted 17 August 2015 - 08:48 PM

I am at less than 0.1% (.010 ) IS scale, At 80 mg of sprycel and sooooo wanting to reduce my dose but my onc says only after 2 more years of at least 80 mg. I can't tell you how envious I feel...praying you will cross that hurdle. So fabulous!

#3 scuba

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Posted 17 August 2015 - 09:01 PM

I just received an email from Dr. Cortes - confirmed - I go another month - no Sprycel. I have a low residual and as long as it stays that way I am good to continue. But monthly ... 

 

In your case Deb - imagine if you lower your dose from 80 to 40 and no change in your status ... your PCR stays the same or even drops. You won't know unless you try. But you can only try if you have the support of your doctor and your inner self.

 

For me - stopping therapy in February I took a  big chance. I'm glad I did. I just want month after month of no drug. And now I have another month.

 

The good news in my experiment is that I can see how my body is reacting. I knew CML is a "slow" disease when in chronic phase with little or no blasts (my case). And I now have my own data points to support my approach. As long as I am below MMR - I get to stay off this drug and live normally.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#4 IGotCML

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Posted 17 August 2015 - 09:16 PM

Scuba, thank you for sharing for cessation results with everyone. It is very interesting and informative.



#5 pammartin

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Posted 17 August 2015 - 10:12 PM

Love  reading these posts.  Keep on, keeping on. 



#6 Cathy

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Posted 18 August 2015 - 07:42 AM

VeryExciting ! Keep us up on your updates!

 

Congrads !

 

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 !!

 


#7 TeddyB

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Posted 18 August 2015 - 02:14 PM

Good news, keep it up :)



#8 Louise1403989338

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Posted 18 August 2015 - 05:49 PM

Scuba,

 

That is great news.  So glad to hear you are still doing so well.

 



#9 tiredblood

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Posted 18 August 2015 - 07:02 PM

When I learned I had CML I soon became overwhelmed with appreciation for those who had been clinical trial participants because this ultimately resulted in my having a drug that works to tame CML.  I just want you to know, Scuba, that I appreciate what you're doing.  You are indirectly helping a lot of people.



#10 scuba

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Posted 18 August 2015 - 07:44 PM

When I learned I had CML I soon became overwhelmed with appreciation for those who had been clinical trial participants because this ultimately resulted in my having a drug that works to tame CML.  I just want you to know, Scuba, that I appreciate what you're doing.  You are indirectly helping a lot of people.

 

Thank you - I am not a clinical trial participant . What I am doing, I am doing on my own. I do have the support of my Oncologist who feels I understand the science and the risk and he's a bit curious. He's supportive and provides the labs and testing so we collect data as we go. I don't fear CML. And that gives me a bit of latitude to try some things I have to find out for myself. I share on this forum so others can see what I learn about my own situation. It's not scientific, it's not a recommendation to try what I am doing, just additional information. Perhaps hope.

 

I was PCRU prior to stopping Sprycel, but only after I started to focus on my immune system and nutritional support. It was rough going until then.  I held PCRU for several months post cessation, but had a bump up and down these last two months - well within the margin of error. I am told "no change".  I am significantly below MMR so I get to continue off Sprycel. There is data to suggest that patients who maintain levels below MMR can live just fine without TKI's without disease progression. My oncologist gives me a 50-50 chance I can become long term TKI free and functionally cured (he refers to it as "burnout of the CML stem cell". I am testing that right now. 

 

What I believe is that I have a battle going on in my bone marrow between CML cells and my immune system (T-cells). So far - there is little change month over month. I will always have CML. But when it tries to expand (come out of quiescence), my immune system is able to reduce it back - much like the way our immune system kills virus' that come out of quiescence but doesn't eliminate them (shingles, cold sores, etc.). As long as my body is healthy (immune system), and I focus on immune system nutrition, I feel I can keep going this way. At some point there may be a true cure that eliminates the CML stem cell. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#11 Terran

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Posted 18 August 2015 - 09:36 PM

Thanks for sharing Scuba. You are an inspiration to me.

#12 CallMeLucky

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Posted 18 August 2015 - 10:27 PM

Congratulations, here's to another month and so on.....
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%
 

 


#13 Billie Murawski

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Posted 18 August 2015 - 11:50 PM

Congratulations, here's to another month and so on.....

  Hi Lucky, How ya doing? It sure is a long road isn't it? I think of you often hopefully we can bounce back soon. Feel free to pm me anytime.   Billie



#14 soundoff

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Posted 19 August 2015 - 12:40 AM

Keep it going Scuba!

#15 scuba

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Posted 19 August 2015 - 07:03 AM

Keep it going Scuba!

 

I have no delusions on this of course. Should my PCR rise above 0.1% (I.S. scale) then it's back on my 20 mg. Sprycel. 

But I feel good with my approach - no drug - one month at a time.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#16 tazdad08

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Posted 19 August 2015 - 12:47 PM

Thanks Scuba! Prayers for all of us on here. I was on a 20% dose for two years before I lost CCrY. It was worth it!! 


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#17 Gail's

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Posted 19 August 2015 - 11:32 PM

Cheering you on Scuba!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#18 SUE

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Posted 21 August 2015 - 08:52 AM

Congratulations, Michael.  


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

 


#19 Kellyb333

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Posted 21 August 2015 - 02:30 PM

Yay!!! Congratulations




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