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Week 11 - No TKI & ANC drop?


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#1 scuba

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Posted 14 April 2011 - 09:07 AM

This just keeps getting interestinger and interestinger.

Just when I thought I was going to re-start on Sprycel - this happens:

ANC = 0.79  (last week = 0.91)

My ANC has dropped on its own without any TKI.  I don't understand why it would do this?  Supposedly I have CML, my leukemic cells should be growing and increasing in number without anything to stop them (unless my body has figured it out without drugs).  I was slowly recovering along the lines of a stem cell transplant patient from January through last week and then this ... FISH is zero but I have a PCR of 35% - admittedly down from January, but it is still 35% transcripts.

What the heck is my bone marrow doing?

I do take curcumin every day (500 mg) - have been since January.

The only thing I can think of is that I hit the running trail this week for the first time in over a year.  (I have to get back in shape).  Today is day 3.  Maybe that is reflected in the sudden drop in ANC?  But I thought that mild exercise (just ramping up) caused Neutrophils to go UP, not down.

Bummer - Not that I was looking forward to resuming Sprycel.  I believe they may want to do a BMB again.  No *#($&# way.  And sure enough, my mouth is drier;  low neutrophils = dry mouth.


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 Trey

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Posted 14 April 2011 - 11:26 AM

If it were me, I would stop the curcumin and see what happens with cell counts.  I have not found references to a direct impact of curcumin on WBC, but not enough is known about using it in cases like yours.

Discussion of curcumin effects on cell processes:

http://www.lef.org/p...rtcl-022f.shtml



#3 scuba

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Posted 14 April 2011 - 11:52 AM

I don't see why Curcumin should cause my cell counts to suddenly drop after 11 weeks when my counts were growing steadily towards normal?

And if Curcumin is keeping my Leukemia at bay that's a good thing.  If my FISH and PCR were increasing then I would be very concerned - but they have dropped.

I believe my surprice ANC drop is due to my re-starting aerobic exercise a few days ago (running).  Aerobic exercise (30 min) does affect Neutrophils.

Also - the Curcumin I am taking is equivalent to a really great Indian dinner!  I can't give that up either.


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 CallMeLucky

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Posted 14 April 2011 - 12:06 PM

Someone mentioned in another post about hydration level.  I believe they said, if you are dehydrated your counts will seem higher, if you are well hydrated they will seem lower.  Could that have any impact?

http://community.lls...age/99637#99637


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 valiantchong

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Posted 15 April 2011 - 07:17 AM

Hi Mic,

Wondering how do you take the curcumin in 500mg ? In what form, powder or water or tablet ? I did not know they sell curcumin in tablet... what is the brand ?

Thank you for you posting...



#6 scuba

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Posted 15 April 2011 - 08:03 AM

V,

http://www.jarrow.co....php?prodid=384

Curcumin is a strong anti-oxidant.  I take one of these a day.

Some additional reading:

http://www.ncbi.nlm....pubmed/15498113

http://aacrmeetingab...ct/2004/1/951-c

http://www.china-papers.com/?p=99933

Curcumin interferes with the signalling pathways in CML cells.  It doesn't 'cure', it simply throws road blocks in the disease cells ability to proliferate.

I suspect that is what is benefiting me right now.  In the absence of TKI, my Leukemia has not progressed.  It has not gone away either.  It is just "there".  Very puzzling to the Oncologists.  I am hopeful that once my normal cell levels get above 1.0 ANC, I will resume Sprycel at 50 mg.  and test that the two together can cause dramatic drop in my CML numbers.  It took only two weeks of Sprycel to put me into severe myelosuppression (ANC = 0.1) as well as cut my PCR numbers in half and drop my FISH to zero.  With a healthier cell population, I suspect I won't suffer the same degree of myelosuppression the second time I start Sprycel again and get on with the program of cleaning up my Chromosomes.  I still intend to get off any TKI once PCRu - should I ever get there.

One additional thought ... I wonder what Curcumin would do for those who are PCRu and decide to stop taking a TKI ?  Perhaps the Curcumin is all that would be needed to keep CML at bay even if the disease is not eradicated.  In other words, you live with the disease in an undetected state for the rest of ones life.

Think about that, Trey!  You might get off Gleevec and just take one of these puppy's.  What's the harm?  If you find your PCR rises, you just go back on your medication.  But if it doesn't...and it stays PCRu for 1, 2 - or more years no more side affects whatsoever.  And perhaps for the rest of your life.

p.s.  Dr. Cortes wants me to have a bone marrow bioposy.  He wants to know what is going on inside my bone marrow that my CML is doing what it is doing (which is nothing right now).  Bummer.


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 Trey

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Posted 15 April 2011 - 08:50 AM

The BMB is a good idea.  Maybe he should also give you a curcumin enema while he is back there.  Maybe you would be cured of CML, hemorrhoids, and sharts, and then be a real wunderkind.



#8 scuba

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Posted 15 April 2011 - 09:00 AM

Maybe he should also give you a curcumin enema while he is back there

Hmmm...  too spicy.  (And he doesn't do the BMB, some young attractive intern does.  I always request female).


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 valiantchong

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Posted 15 April 2011 - 12:45 PM

I did not know u took it seriously on the curcumin. I think you are right curcumin will not cause your ANC go low... Did you mention to your Dr, on the whether curcumin is affecting your ANC ? See what he thinks....

All the best to you and recover soon...






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