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Minimum Residual Disease: Can we live with it drug free


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#1 scuba

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Posted 11 October 2012 - 06:18 AM

http://asheducationb...2011/1/136.full

This is a nice summary (Dec 2011) on various studies involving TKI cessation as it relates to "cure" and potential for living with minimal disease drug free.


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 scuba

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Posted 11 October 2012 - 06:19 AM

From the above article:

Three models on living with disease/cure.

A = Stem cell depletion (leading to cure)

B = Cure outright

C = drug free minimal disease - surveillance

Model C has my interest as it is the anergy of our T-cells that allows for the proliferation of this damn disease in the first place.

Figure 1.


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"


#3 cousineg

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Posted 11 October 2012 - 10:55 AM

Thank you Scuba for this article,

I was PCRU between 2009 and 2011 with Gleevec (400mg). I relapsed, so I was in MODEL C (see the graph above).  I had a lot of stress for this two years and I took Advil for the headaches (not a good idea!). My Immune System crash! After during one year, I stayed on a plateau (CCR), Recently, I came back to PCRU. So, I think that my immune system is too weak to control the CML. I need a complement with the ITK (Gleevec in my case). For the moment, I thought about something like  chlorogenic acid  that we can find in coffee and specially in green coffee bean extract.

Other articles about 'Cure':

The French trial called STIM (Stop Imatinib)

Cure possible for Chronic Myeloid Leukemia

Betel leaf may help fight CML

Feverfew extract (parthenolide)

Possible cure for CML in Fish Oil

Can dandelions kill cancer?

Can immunotherapy cure leukemia?

CM Vaccine

Math could help cure leukemia

Can genetic sequencing help to cure leukemia?

Chlorogenic acid inhibits Bcr-Abl tyrosine kinase and triggers p38 mitogen-activated protein kinase-dependent apoptosis in chronic myelogenous leukemic cells



#4 CallMeLucky

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Posted 11 October 2012 - 12:52 PM

Did you relapse while still taking Gleevec or had you stopped taking it and relapsed?


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%
 

 


#5 cousineg

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Posted 11 October 2012 - 01:29 PM

I relapse while still taking Gleevec



#6 Sneezy12

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Posted 11 October 2012 - 01:53 PM

I don't understand. You state that you relapsed on Gleevec, but now you're back on Gleevec and now you're PCRU. What do you mean by "relapse"? Regards, Frank



#7 cousineg

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Posted 11 October 2012 - 02:43 PM

The medication 'Gleevec' stopped to work (may be for 2 or 3 months). I was PCRU and the following test  PCR was positive (-log2.3). After, it took one year to retreive the PCRU with the same medication (Gleevec, 400mg).. So, the Gleevec seems to work against but slowly. Recently, I start to drink one cup of coffee in the morning. So, I  have a little bit of chlorogenic acid.  In my opinion, the amount of chlorogenic acid in my body, was not enough to retreive the .PCRU.  But I think that the mean reason is that my immune system was weakened by the stress and the Gleevec was temporarily desactivated by the 'Advil'.

So, according to graph C, I think that if  I try to stop the medication 'Gleevec' after 2 years, I will relapse again. I need a complement that will replace the ITK and help the immune system to keep me in CMR.



#8 cousineg

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Posted 11 October 2012 - 04:17 PM

Other interesting articles:

Detection of major bcr-abl gene expression at a very low level in  blood cells of some healthy individuals

The Presence of Typical and Atypical BCR-ABL Fusion Genes in Leukocytes of Normal Individuals: Biologic Significance and Implications for the Assessment of Minimal Residual Disease

 

Detection of BCR-ABL positive cells in an asymptomatic patient: A Case Report and Literature Review



#9 Trey

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Posted 12 October 2012 - 08:55 AM

For some people the issue is uptake, not whether Gleevec will work once it gets into the leukemic cells.  For Cuz, it could be an uptake issue.  It could have been ibuprofen interference as he suggests, or maybe something else. 



#10 scuba

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Posted 12 October 2012 - 09:31 AM

What these papers inform, even though dated (90's) is that the fusion gene (bcr-abl) is a natural occurrence in hematopoiesis cell biology. As these papers point out, in PCR assays on normal blood draws a majority were found to have the transcripts of the fusion gene. Does this mean they have CML and it just hasn't developed yet? Does this mean they have CML and it will just stay low level as chart "C" above indicates? Who knows.

We know that translocating DNA strands is common in cell biology mitosis. Most translocations are harmless. Some - in our case, the fusion gene - can lead to full blown CML, but it doesn't always lead to CML. What keeps the fusion gene in check in the wider healthy population? T-cells perhaps? or some other biochemical pathway that we, who have CML, no longer have. Or - as I was postulating above - perhaps we who developed CML in runaway mode only needed to beat the beast back down to a low residual level so our bodies can naturally defend against it. There is no study that I know of that documents what happens to patients who stop taking their TKI drug while in low level residual disease (0.01% PCR) and monitor if it stays low.

Fortunately, there exists a suite of drugs (our TKI's) that sufficiently deplete the progenitor cells by inhibiting the action of the fusion gene, that for all practical purposes the disease is no longer a threat to kill us. But I, for one, do not want to keep taking a tyrosine kinase inhibitor for the rest of my life. I will get the courage to stop taking it, when I see all zero's in my PCR lab report - knowing full well, that it is quite likely that some CML cells are still there.


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 TeddyB

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Posted 12 October 2012 - 12:04 PM

Did you take a lot of Advil cousineg?



#12 cousineg

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Posted 12 October 2012 - 02:45 PM

No, may be, 3 or 4 by week. I took Gleevec at 7h00 PM and Advil at 9h00 PM.



#13 Antilogical

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Posted 12 October 2012 - 07:22 PM

I'm highly interested in this topic.  I have an arthritic knee and have been given the go-ahead by my onc to pursue a total knee replacement.  Since my diagnosis in February, I've been reluctant to take meds, as I was afraid they'd interfere with the Gleevec.  Until my surgery takes place (and probably after), I NEED MEDS!!!  Wondering what everyone else was taking and whether it affected the labs.

-sdf


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.


#14 Trey

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Posted 12 October 2012 - 08:49 PM

How many times have we discussed that the PCRs in the 1990's that resulted in the ridiculous conclusion that large numbers of healthy people have the Philadelphia Chromosome was due to a high false positive rate from inferior PCR equipment at that time?  Look at how inadequate the current PCRs are. 

banghead.gif



#15 Antilogical

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Posted 12 October 2012 - 09:16 PM

Best Post Ever.


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.


#16 cousineg

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Posted 13 October 2012 - 06:53 AM

If these articles (dated 1998) are obsolete, why they don't update this information with new articles. I will see my oncologist  monday morning and I will ask him if with the new equipment for PCR test in 2012, we can find some healthy people with the Philadelphia Chromosome. We can also ask Dr. Goldman and Dr. Deininger who participate in the redaction of this article in the Journal Blood.

The Presence of Typical and Atypical BCR-ABL Fusion Genes in Leukocytes of Normal Individuals: Biologic Significance and Implications for the Assessment of Minimal Residual Disease

Why some recent studies keep this obsolete article in reference?



#17 Trey

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Posted 13 October 2012 - 08:13 AM

They would need to re-accomplish the testing, not just re-write the article.  If you look at the data, they tested each blood sample 40 times, and once or so it came back positive for 12 of the 16 people tested.  And they did this with "nested PCRs" which introduces more errors into the process, and older equipment and reagents.  Just ask yourself, since PCRs can only detect BCR-ABL if there are over a million such cells in the body, how does it make any sense that 75% of the random healthy people tested in this study were positive for BCR-ABL?  That would mean 4.5 billion people on earth are walking around PCR positive for BCR-ABL, which is only made by the Philadelphia Chromosome.  It simply does not pass the laugh test -- you look at the test results and it makes you laugh. 

As for why smart people have cited this BS report, which is the only such test/report on this issue, you would need to ask them. 






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