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PCR at 4 months following Cessation trial


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#1 scuba

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Posted 22 June 2015 - 01:08 PM

I just received my PCR result at my 4 month mark following my Sprycel cessation (February 2015).

 

Result = little change (in fact a drop from last month although in the data noise all around PCRU). I get to continue drug free! Also - I no longer need monthly PCR checks - I now get to go every two months (next test is in August instead of July).

 

I do have fluctuations (near limits of detection), but my doctor told me he sees this all of the time in his cessation patients and he suggested we just keep going. He does think I may be on my way (to a TKI free life!). He mentioned that most cessation attempts, if they fail, fail in the first month (more than one log jump) and then big drop off second and third month. He's hopeful and encouraging. 

 

I am thrilled. I feel a vintage wine opening soon - like tonight!

 

Thanks all for your encouragement and support!

 

Disclaimer: Voluntary cessation is not recommended without your doctor's support and guidance.


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 mikefromillinois

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Posted 22 June 2015 - 01:14 PM

Congrats Scuba!  Keep the faith.



#3 rcase13

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Posted 22 June 2015 - 01:53 PM

Heck yeah!!!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#4 Trey

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Posted 22 June 2015 - 01:59 PM

Are the PCRs reported as actual numbers?  If so, what have they been?



#5 scuba

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Posted 22 June 2015 - 02:06 PM

Congrats Scuba!  Keep the faith.

 

This was a big month - I was half expecting a log increase and loss of PCRU or even MMR.

 

And what I feared most - more than seeing a jump in PCR was losing my bet to Trey. That would have been unbearable. Absolutely unbearable.


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"


#6 scuba

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Posted 22 June 2015 - 02:13 PM

Are the PCRs reported as actual numbers?  If so, what have they been?

 

From 'undetected' to <0.01% M.D. Anderson scale which is approximately 0.003% I.S. scale. That's what it has been since I stopped in February. Sometimes it was reported as <0.01 or "undetected" in the same sentence. They don't report third decimal place. It is considered "noise". 


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"


#7 soundoff

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Posted 22 June 2015 - 02:46 PM

Scuba, Congratulations! Please post the last few PCR results verbatim minus the HIPAA stuff. I would like to see how they construct the PCR results.

#8 scuba

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Posted 22 June 2015 - 03:23 PM

Scuba, Congratulations! Please post the last few PCR results verbatim minus the HIPAA stuff. I would like to see how they construct the PCR results.


Note the results are in M.D. Anderson Scale not I.S. Scale. Note the "zero's" in parenthesis. I'm told this
 is interpreted as below the limit of the technique (hence <0.01).

Dr. Cortes told me as long as I stay below 0.28 (which is 0.1 on the I.S. scale), he's fine with me doing what I am doing. 

Below is the report:

MOLECULAR STUDY, PB                            RECEIVED                   
Other tests ordered on the same accession number are available below.

 
_____________________________________________
REAL TIME BCR, PB
¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯¯
BCR-ABL Quantitative PCR PB                      <0.0100 %               (0.0000-  0.0000)
     Low Positive is < 0.01   BCR-ABL to ABL transcipts
     High Positive is > 100.00 BCR-ABL to ABL transcipts    

REAL TIME BCR INTERP PB                      
t(9;22); BCR-ABL1 Translocation Assay by Quantitative RT-PCR:
A b2a2 BCR-ABL1 fusion transcript coding for the 210kDa BCR-ABL1 fusion
protein is detected by quantitative real-time RT-PCR. 
The percentage of BCR-ABL1 to ABL1 transcripts is <0.01.
 Methodology:

 Quantitative real-time PCR analysis was performed on reverse-transcribed

RNA from this sample for the BCR-ABL1 fusion transcripts resulting from
the t(9;22)(q34;q11.2) in Leukemia. This multiplex assay is designed to
detect common BCR-ABL1 fusion transcripts e13a2(b2a2), e14a2(b3a2) and
e1a2. The fusion transcripts are differentiated based on the size of the
PCR product using capillary electrophoresis. BCR-ABL1 and ABL1 transcript
levels are detected simultaneously and quantitative results are expressed
as the percent ratio of BCR-ABL1 to ABL1 transcript levels.  This ratio
may vary up to one-log because of methodological reasons.  The sensitivity
of detection of BCR-ABL1 transcripts by real-time PCR is between 1 in
10,000 and 1 in 100,000
Comment:
This assay can be used to monitor minimal residual disease (MRD). 
ASR Disclaimer:
This test was developed and its performance characteristics determined by
the Molecular Diagnostics Laboratory (MDL) at MD Anderson Cancer Center.
It has not been cleared or approved by the U.S. Food and Drug
Administration (FDA). The FDA has determined that such clearance or
approval is not necessary. This test is used for clinical purposes. This
laboratory is certified under the Clinical Laboratory Improvement Act
(CLIA) of 1988 to perform high complexity clinical laboratory testing.

++++++++++++++++++++++++++++++end report++++++++++++++++++++++++++++++++++++

 

February:

BCR-ABL Quantitative PCR PB                      <0.0100 %               (0.0000-  0.0000)

 

March:

BCR-ABL Quantitative PCR PB                      <0.0100 %               (0.0030-  0.0000)

 

April:
BCR-ABL Quantitative PCR PB                      <0.0100 %               (0.0000-  0.0000)

 

May:

BCR-ABL Quantitative PCR PB                      <0.0100 %               (0.0030-  0.0000)

 

June:

BCR-ABL Quantitative PCR PB                      <0.0100 %               (0.0000-  0.0000)


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"


#9 JPD

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Posted 22 June 2015 - 03:40 PM

Grats Scuba :ph34r:


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#10 story

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Posted 22 June 2015 - 04:21 PM

Congrats Scuba! Keep on keepin on!



#11 scuba

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Posted 22 June 2015 - 04:41 PM

I have a working hypothesis ... I must check it out. What I am doing is not a "cure". When it comes to cancer who knows what a "cure" is .... Cancer is a failure of the immune system. Either the cancer suppresses the immune system (i.e. "self") or the immune system fails to respond to the aberrant proteins the cancer cells produce (i.e. bcr-abl). So, I thought that by boosting my immune system every which way I can, I stacked the deck in my favor. All my research points in that direction. So I did it and continue to do it. It's a lifestyle now. I had to try stopping Sprycel and see what happens.

 

But I have to tell you ... I have friends who break every nutritional rule in the book (i.e. sugar eating, carb loving, veggie hating) and have spot on blood results - smack in the middle of every measure - and they're much older than me. My mother is 92. Alive at 92!!!  No Cancer, no vitamins - nothing. She has high blood pressure so she takes a beta blocker, but at 92...hey - she's done it. I told her about Curcumin, but I think she would forget to take it.

 

So who knows ... it's a throw of the dice and I was willing to try.


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"


#12 Gail's

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Posted 22 June 2015 - 07:27 PM

Good for you 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

#13 pammartin

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Posted 22 June 2015 - 07:33 PM

Michael,

I do not have great enough words to tell you how excited I am for you.  All I can say is enjoy life.  And I believe you are.

 

Vintage wine eh?  You will have to share on what you choose.

 

Pam



#14 Antilogical

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Posted 22 June 2015 - 08:16 PM

Not ready to do without my tki, but I'll surely pop a cork on a bottle of wine with you!


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#15 scuba

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Posted 22 June 2015 - 08:58 PM

congratulations!How long did you take sprycel? How long have You been pcru before TKI succession?

 

In January 2011, I started with 70mg Sprycel and my WBC's (Neutrophils) collapsed (ANC = 0.1). I was off therapy for 3 months after that in order to allow my system to recover. It was an unusually slow rise back to normal (which was not achieved). I was taking Curcumin during this forced Sprycel cessation, however. My FISH during that time fell from 53% to 7% (without any Sprycel) which was a surprise to me.

 

After that period, I was re-started on only 20mg Sprycel and after 4 months my FISH went to zero. PCR continued to fall and hovered around 0.05% (M.D. Anderson scale) by mid 2012. In July 2013 I discovered a severe vitamin D deficiency during a routine physical and began a vitamin D3 program to raise my levels to high normal. This was on the advice of my primary care physician. 

 

I achieved 0.01% (M.D. Anderson scale ~ 0.003 I.S.) in March of 2014. In June of 2014, I went below 0.01 - limit of detection and continued that way through the rest of the year. In February of this year, I decided to stop Sprycel, one month prior to my next PCR test to see what happens. I have been off Sprycel since.

 

I did not follow the usual two year "PCRU" rule. I went six months and decided it's time to try stopping. I felt if my PCR jumped by more than a log I would just resume taking the drug. I still feel that way. I take it one month at a time. I am waiting on confirmation that I can take my next PCR test in two months.


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 CMcLain

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Posted 22 June 2015 - 10:43 PM

Amazing news! Continuing to pray for you Michael. I'm so appreciative for the research and study you've done and shared with the CML community! 👏🏻🙏🏻☺️

#17 missjoy

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Posted 23 June 2015 - 07:52 AM

Thanks for sharing your personal experience. I remember reading your posting about curcumin therapy. I read about curcumin. I asked our oncologist about curcumin therapy but he recommended not to make any change at the moment.

#18 Tedsey

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Posted 23 June 2015 - 01:04 PM

That is awesome!  What great news!  Maybe it is really the wine after all!

 

I have a grandmother who is 98 and on no meds, was overweight, smoked, had diabetes type 2 and high bp.  She ate fast food, all kinds of sweets, tons of processed food etc.  She has recently recovered from hip surgery too!  She loved grapefruit, went crazy for nuts and whipped cream though, and ate a lot of that.  What a great immune system!  I am so jealous.  I have been a vegetarain most of my life, have been active, followed all the conventional health rules out there and still got CML decades below the average!  Sucks!

 

I am reading about diet and genetics.  There is probably a lot of truth about what food our specific body needs in order to stay maximumly healthy.  A healthy diet for one may not be the same for another.  It is an exicting area of research "nutrigenomics".  I am sure it is poo pooed as a new ageish thing.  But I think there is something to it.

 

Always rootin' for you!

 

Teds



#19 scuba

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Posted 23 June 2015 - 02:16 PM

That is awesome!  What great news!  Maybe it is really the wine after all!

 

I have a grandmother who is 98 and on no meds, was overweight, smoked, had diabetes type 2 and high bp.  She ate fast food, all kinds of sweets, tons of processed food etc.  She has recently recovered from hip surgery too!  She loved grapefruit, went crazy for nuts and whipped cream though, and ate a lot of that.  What a great immune system!  I am so jealous.  I have been a vegetarain most of my life, have been active, followed all the conventional health rules out there and still got CML decades below the average!  Sucks!

 

I am reading about diet and genetics.  There is probably a lot of truth about what food our specific body needs in order to stay maximumly healthy.  A healthy diet for one may not be the same for another.  It is an exicting area of research "nutrigenomics".  I am sure it is poo pooed as a new ageish thing.  But I think there is something to it.

 

Always rootin' for you!

 

Teds

 

Thanks Teds!

 

I have become a believer in nutrition and immune support. I am moving away from stuff in a bag to what grows naturally. I'm definitely not a vegetarian - but it is amazing how many veggies I have added. My latest one is Shiitake mushrooms - sauteed in butter with some teriyaki sauce. It sure tastes better than Natto. Shiitake mushrooms have AHCC (which another member of our forum told me about in an email) that is reported to increase NK (natural killer) cell activation and growth. It is very good for the immune system according to what I have been reading. So I added it to my diet. Like Curcumin, it's been around in people's diet for thousands of years. That's good enough for me.

 

p.s. but a nice scotch and cigar on a humid Houston evening once a week is one vice I won't give up. And wine is nutrition!


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"


#20 Davetl

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Posted 23 June 2015 - 10:42 PM

Wonderful News Scuba....!!!




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